Dissecting Cellulitis of the Scalp
I am a family medicine resident finishing up my last year. I unfortunately have a condition which I discovered doing my own research called Dissecting Cellulitis of the Scalp. It is horrible!!! This is a rare condition that usually affects black men in their 20’s. It is a very painful, cosmetically disfiguring disease that I have dealt with for about 4 years now. I have tried all of the antibiotics and medical treatment that you can think of and have seen many dermatologists that in my opinion, are not really aware of how tough this is to treat. I have read some studies that state that Laser therapy has been used with some success and others that state that complete scalp excision is successful. Of course, I don’t want my whole scalp taken off, but I am willing to try Laser therapy if it really has good results. At this point, I am really ready to try anything. If you are familiar with this or can even refer me to someone who is, I would really appreciate it.
This is a rare condition and as you said it is very difficult to treat. Before going as far as having surgical excision of your scalp, I found a case study in which they had success in treating recalcitrant dissecting cellulitis with Nd:YAG laser. The study was published in Dermatologic Surgery in August 2004, Volume 30 Issue 8, and was written by Eric C. Parlette MD, Nathan Kroeger, EVictor Ross MD — Laser Treatment of Recalcitrant Folliculitis Decalvans.
Unfortunately, I can’t post the text here and the publisher charges a fee to view the text, but it may be worth looking into. Good luck.
I’m 25 and have had this condition since I was 15. It aggressively became worst about 3 years ago. I have had various sinus tracts that seemly is the key to the disease progression. I am currently traveling to Detroit, Michigan to recieve the laser treatment that you speak of. I had to do my own research also to find this group of doctors. When I had told my doctor back home about the laser treatments, she shot it down immediately. But, I decided to give it a try anyway beacuse this is too painful and sociallly unacceptable to not investigate every option. I have been traveling from Cincinnati to Detroit every month for the past 6 months to recieve treatements and I must say that IT WORKS! for me it has been anyway. I no longer have spontaneous drainage, swelling and severe inflammation is diminished greatly, and Pain is completely gone unless I mistakenly bump my head or something like that. Contact me by e-mail if you need more information drail2000@hotmail…..I would be more than excited to help.
Dear Drail,
I have found your message on the baldingblog and I was very happy to meat someone on the intenet who understands the suffering of dissecting cellulitus of the scalp. I am living in AMSTERDAM, the Netherlands, Europe where the medical world has no experience at all with this illness. I am probalbly the only one in this country dealing with this illness for ten years now. It is good to hear that you have a good experience with the laser treatment. Could you tell me all about it because I really need help. I need information about the treatment, the places where I can find the treatment, the costs and things like that. Also I am curious about your well being? Are you still doing better? Please contact me asap on the following emailadresses. moneynode@live.nl and tsehaina@hotmail.com
Thanking you in advance,
Greetings Dominique and Tsehai
Hi, has anyone had any success with natural products. I have started to develop this disease abour 1 1/2 years ago age 29 now, and not taken any medication. My symptoms have been mild few small bumps on the back of the head. More recently have small outbreaks on the back. I have though kept a very low haircut so I could apply virgin coconut oil. In addition I have been eating the coconut oil as well. This seems to help quite a bit drying out the bumps that break. I have seen that also bumps that were going to develop have also gone away. I have not been so regular with my treatment but trying to know as had painful outbreak. I started trying this as Coconut oil prevents inflamation and most fungus don’t like it. I will try this treatment now for two weeks and keep a log and tell you want I find.
So far what I do is I wash my hair every day with a shampoo for good scalp health. “Cutrin” Special Shampoo” Then i use cold pressed virgin coconut oil for the night. I will also apply some in the morning. Thats all for now.
I am a 34 yeaar old white male, and have had this disease since i was 19. My father has the disease as well. i have recently been asked by my dermatologist to take Accutane, however after reading the possible side effects i am very hesitant. have any of you heard of this drug being effective? the laser treatment seems very interesting, i would like to hear of more success stories of this treatmnet.
My daughter first experienced this last year, when she was 14. She lost about 1/3 the hair on her occipital area. Zithromax, minocycline, and topical antibiotics were useless. Accutane was the only thing that helped. Luckily, her side effects were minimal — and since she already has very dry skin, and she was on Accutane in the winter, I was surprised at how little the Accutane affected her. The worst thing about the accutane is the regulation of the drug. She has been off of the Accutane for 3 months, but has recently had another lesion occur. She’s scheduled to go back on the accutane in a month (per regulations). I would be happy to hear feedback on this site regarding long-term success with laser therapy. Thank you
I’m glad i found this link…. My husband has been dealing with this for about 5 years, and it just keeps getting worse. They are so painful and leak all the time. He hates taking the medication, and it really seems like it has limited effectiveness anyway, so why push him to?
I would love to hear more about the laser therapy option, if anyone knows anymore. Thank you,
I am 33 yrs old, white male and have had the disease since 19 yrs old.
Its horrible and very painful.
Tried Accutane three times. Its not a permanent cure but will dry the scalp for approximately 5 yrs.
My first places were more on top of my scalp and gradually moved to the sides and neck line.
Very painfull and irratating to the point where you cannot help squeezing to relieve pressure, the lump will leak itself if not dealt with before hand which can be embarrising in a work environment.
I dont really have advise on treatment, a specialist who I met suggested to insert Cilican implants under the skin as a way to get rid of scarring.
I am bald and the only treatment I would like to try is a hair transplant to cover scarring.
I want to know if anyone has tried hair transplant successfully onto scar tissue, can it be done?
I am 28 y/o male and have had the condition since I was 19. I have done all the antibiotics and accutane. The Cephalex and rifampin combination worked okay. I find that the condition sems to be seriously affected by friction. If I wear a hat or shirt or glasses that puts any pressure on my scalp or neckline, a new bump will develop there. It is extremely difficult as it is at times itchy and painful, making it hard to sleep on pillows.
Everyone feeling down, please keep your heads up. It seems that this condition is too rare for much research to be done, so sharing information amongst ourselves is important.
Hey Drail-
I’ve seen many doctors on this and they all don’t know how to treat this condition. I live in Detroit and would want to know which doctor you saw that performed the laser treatment?
Can you post the doctors name here?
Thanks!
Has anyone had a hair transplant with this condition and have it work? How much are hair transplants?
Mike
I am about to be 22 sept 19th ive had this conditoin for about 2 years now. It started with little bumps and then got bigger and bigger and i started to lose my hair its very very painful and ive been to alot of doctors and taken alot of different medicines and i am currently taken accutane i heard alot of bad things about this medicine i am kinda scared on taken it but i guess we will see if it works. Its hard cause i live in a small town and i have to drive about 2 hours once a month to see my doctors its hard for me cause i live with my mom who is single and my dad left my mom when i was 4 i havent seen him since but my mom doenst have a car so thank god i have an amazing girl friend that supports me and drives me to every appointment but im in a time right now were i need to start my life but this condition is holding me back in alot of ways i feel like i cant work cause i am very embarresed about what is wrong with me soo i signed up for SSI and ive been waiting almost 5 months now and they have not gave me a answer im just not to sure what to do but that laser surgery sounds good but if anyone can relate and tell me what hey did for work and how hard it was for them i feel like im the only one in this world iwth this conditoins that woudl be awesome if you typed something back
thanks
the doctor told me i had this today. so i went home and read alot of bleek and dark stuff about this and got a little upset. the thing about it that i cant even figure out is how it occurs?? is it genetic? virus? fungus? is it contagious? if you know any of these please respond at atr0208@yahoo.com
(addison 17 year old white male)
Hi,
Matthew again. Wrote here before but here is some more information. My brother is also affected but much worse. It seems to start around 18-19 years of age. He also tried many medications which really didn’t help. He took Accutane when he was 21 and that seemed to cure it for about 2 years. Then it came back but not as bad.
It developed on me when I 27-28. Didn’t have it as bad as some people or my brother but is annoying. Read my post entry number 4. I don’t like taking all sorts of medicine and never had. I really recommend cold pressed virgin coconut oil. Few weeks after taking it orally and applying to my scalp at night and during the day made it totally go away. I don’t think it is a cure but might offer some alternative relief for some. For a few months I didn’t have any outbreaks. Can someone else try this to see if it works for them? You can buy it at a health store.
I took a teaspoonful 1-2 times a day. Then for the night I took half a teaspoon and applied to the scalp. Rub into the scalp till it is absorbed. (change your pillow cases often as they will get oily:) Then in the morning wash your hair with a good scalp shampoo. Not a cheap head and shoulders!!! Got to a hair salon and ask for one that helps for good scalp help. Then apply small amount for the day. I saw results right away. Try also to drink plenty of water during the day. Keeping your hair low helps. Someone try this and tell me the results.
Hello from England. Developed this about 3 years ago after being treated for Kidney failure. Think I got a form of MRSA which has developed into DF. Been on the same anti-biotics for about 6 months but not convinced they working. The consultant at hospital saying i should stick with the treatment. Glad I found the sight…Gonna try the coconut oil as much prefer the idea of natural defence where possible
Phil
Hey my name is Rick im a 23 yr old blk male. I just discovered I had dissecting cellulitis last week and also nodual acne which has some what the same sypmtoms just on the face. It is very painful, embarrassing, and also irratating. It started as just one bump in the scalp and in a year and a half it spread over the top of my head causing some of my hair to fall out, luckily i had long hair and even though its half the length it was then no one can notice it in my scalp. My dermatologist prescribed accutane because other antibiotics such as Doxcyline does not work, has anyone had any harsh side effects from using accutane?
This is a message to Rick and others. Be sure to read all the comments here. The accutane dries out you skin like there is no tomorrow! I never took it but my brother did. Dries out lips skin till it starts peeling. On my brother caused the first layer on his lips to peel off. This is strong stuff. Lotion an lip balm do little to help as it dries you out from the inside. Your skib will recover from it but not sure about your liver. Read up on this drug. My brother has to go to have his liver checked during the whole treatment. And for crying out loud….someone tell me if the have tried the coconut oil!!! All the other drugs have little or no effect. Coconut oil helped for me. Just a little on the scalp like half a teaspoon. Try it for a week or so and come back here and post your results:)
Hello My name is Travis. I have been dealing with dissecting cellulitis for about 20 months now. I have tried almost everything just like most of you. Antibotics, steroids,dapsone, and numberous topical creams. About 1 week ago my Doctor started me on accutane. The only side effect I have shown is dried lips, and trouble sleeping. I was troubled about taking it, but she advised me that. If we did not try everything that my insurance would not pay for any other experimental treatments if this failed. At this time I have not seen any results. If anything the condition is getting worse, but I have been told that this might be ordinary with this treatment. It gets worse before better. I am optimistic that it will work, and I will post later to advise you all.
Thanks Travis.
I too have been dealing with this. I first noticed a cyst on top of my head in Feb 07 when i was at boot camp for the Marines in San Diego, CA. My drill instructors had me see the Medical Officer and they called it a pilar cyst and did a simple incision and drain procedure. Did not have a problem until i was at a 8 week long field exercise in 29 palms, california. there i was misdiagnosed again and treated with a simple incision and drain but this time they had the cyst packed with iodoform gauze everyday. That eventually healed up and then more recently earlier this year i was visiting family before i left for Iraq and another cyst formed. this time i requested to see a dermatologist in the Navy and they shot me down saying i was too close to deployment and could not get me scheduled in time so they did another incision and drain with packing. Of course that healed up and all through my tour in Iraq i kept dealing with several other cysts on my scalp and all they could do was give me antibiotics since there are no military dermatologists in Iraq. The heat and sand did not make it easy to deal with. I finally have come home and seen a dermatologists not long and ago and started treatment with accutane. The existing 2 cysts i had during Iraq have started to clear up and even has hair starting to sprout in. a few other small cysts formed but my derm told me thats normal and eventually it will clear up. If this doesnt work then i am going to request the laser treatment. Dissecting cellulitis has made it very difficult for me since i have dealt with it through most of my Marine Corps career and since i am in a combat MOS it makes field training difficult with all the bleeding and pain.
Thank God I found this site. I am a concerned mother looking for any information I can find out about this dreaded disease. My 19-year old son is a college student and was just diagnosed December 31, 2008 with this condition. We are all still trying to come to terms with the diagnosis. My son’s dermatologist had very little information to give us. He simply wrote “dissecting cellulitis” on a sheet of paper for me and told us to look it up. The information I’ve read so far took my breath away. I am hoping the doctors have misdiagnosed his condition, as this is simply an aweful condition for anyone to have. I had never heard of dissecting cellulitis and have never known of anyone else who had it either. Why does this disease primarily affect young black men in the prime of their life (19 or 20 at onset)? We are seeking a second opinion, as my son’t dermatologist would like him to begin on Accutane. I work in the medical field and have a close friend who was on Accutane off and on for three years for a severe acne problem, so I know about the damage it can cause to your liver. In women, there are also problems with fertility- not sure if that’s true for men. Unfortunately, we live in New Jersey and my son just returned to college in Virginia. Working with my husband’s insurance carrier, I was able to give me son the names of two dermatologists in the vacinity of his school who he can check out before making an appointment. My God, where did this aweful disease come from? I can’t find any known origin and worry because there seems to be no cure. My son is in the prime of his life, so I am determined to arm our family with all of the information on treatment modalities while he is in the early stage of this condition. He has one large lesion just below the crown of his scalp so far. It has been drained twice; the second time he had 4 steroid shots in his scalp, with no anesthetic I might add. My heart broke to see my son go through this pain.
My husband and I are really looking for any “natural” treatments that could slow the progression. I will definitely pick up the cold pressed virgin coconut oil and take it to him in virginia this weekend (thank you, Matthew). Matthew how much did you take by mouth (and how did you know what dose to take, or was it trial and error?). I am going to give this blog site to my son.I’m not sure he is ready to talk about his condition yet publicly because he is a very private person and is not even talking about it much with his family yet. My heart goes out to all of you and I hope you won’t mind my staying in touch with you through this blog, as it is the first ray of hope and knowledge I have seen. Knowing my son is not the only person affected by this is of little comfort to me, as I know you are all suffering, but I am glad to have another outlet, as I have been feeling so helpless to provide him with any hopeful information. I, too, am also interested (even though it’s early for us), in the success rate of the laser surgery, its side and long-term effects. Thank you, thank you, thank you for any information you are willing to share with a concerned and worried Mother.
Hi everyone. I am 29 and have suffered from this since I turned 21. I also have suffered from follicular occlusion triad with acne conglobata and hydradenitis supperativia since I was 14. I have many lesions and loss of hair all over my head. Mainly towards the crown. I have taken accutane along with several antibiotics in the past. Some of the antibiotics seemed to worsen my condition when others seemed to keep it in check. The accutane did seem to work the best, but never completely cured it. There are many side effects to take into consideration if taking the Accutane. This is the first I’ve heard of the Virgin Coconut Oil and will be trying that soon. Right now I am not taking any medication. I have noticed that growing my hair longer has had a negative effect for sure, so I try to keep it as short as possible. The problem with that though, is that I have so many bald spots and it gets harder to cover up when it’s shorter. I have black hair and regularly use eye liner make-up to cover the spots. I’m a pretty good looking guy and most people don’t know that I have this condition. I also have severely suffered physically and mentally from this disease! It is rare and makes it almost impossible to live a regular life. If I can think of anything else I will write back. Thank you all for your comments for it is somewhat comforting to know I’m not the only one suffering from this condition. Take care, Good luck and God Bless. Josh
Hi Karen and everyone,
For those looking for natural treatment I was recommending coconut oil. I was checking for other natural products as well.
I found that using Aloe Vera gelly (Not the cheap kind they sell in CVS) I got this from Forever Living Products. Like I said I have a mild case compared to some but have small flare ups from time to time. Tried that and it worked even better:) Had one large bump that I had to drain and put aloe vera on it. Next day it shrank the lesion to nothing. I couldn’t believe it. So I applied it all over my scalp and a few bumps that I thought would develop didn’t. I know this is not a cure but offers to keep it in check pretty good.
What are others peoples races here. Mostly I heard it affects black men who are Afro-Caribbean decent. Well my both parents are from Jamaica. My father didn’t have it but not sure of my mothers side of the family.
Please try some of these products and see it if makes a difference for you. Please take a log. Perhaps 4 weeks using and then not and see if flare ups come back. Or try half your scalp and see what the results are.
Sometimes I got lazy I would use it and would be problem free for many weeks and stop using. I would really need to buckle down and try for non stop for like 6 months and see the results. Someone else try the same.
Cheers
Hello all,
My name is Ronald I’m a 26 year old african american. I’ve had dissecting cellulitus for 3 years now. It has greatly affected my life. I cant sleep some nights do to the pain. I work in a local government facility and i have to wear hats to cover up my scars, bumps and missing hair patches. When i go out on a date i have to wear something over my head. It has caused me great depression and has over shadowed my diabetes. I have inquired about hair transplant surgery which is about $10,000 but was told the hair grafts might not hold. The lack of sleep i am getting and the pain associated with this disease is very debilitating. I’m very glad i found this site and makes me feel a bit better i’m not alone.
hi all. My name is jeremy and i am 29. I have been dealing with dissecting cellulitis of the scalp for about for about 3 years now . It wasnt too bad at first, but has gradually gotten worse and worse . I am now over half bald , and the pain is unreal. my pillow cases are covered nightly with blood and pus,and i struggle to sleep. I am caucasian by the way, so it happens to anyone. I tried accutane for two months, and it seemed to help, but my liver was effected badly, and i do not know if it will ever heal. I am looking for feedback from anyone else who has it as severe as I.
Ronald and Jeremy,
You guys pretty much wrote out my life in your posted messages.. From the pain, humility, transplant surgery, and medications.. Been there, done that! Tonight I just got over 2 full days of excruciating pain from two boils on my head that conjoined and inflaimed. My head was on fire!! Luckily I had some pain killers.. Throughout all the years I’ve had this I’ve found that soaking these bumps in the hottest water you can endure for as long and as much as you can endure it will speed up the process, along with applying a “boil cream” afterwards. Obviously, I can’t give you any direction to any treatment, but this is just a way to help speed up the mean process that these bumps go through. And, like you Ronald, I’m really glad I found this site. Our condition is a very rare disease, and it’s easy to feel isolated amongst other people that have no idea what we go through on a daily basis.. In other words, it sucks! With no cure in the works, my only hope is that it will just eventually go away.. Who knows?! I do appreciate all that is written on here though, and feel somewhat comforted by everyone’s testimonies! Thanks for that.
This started on me when I bought a puppy from a pet store, the puppy was sleeping next to me head on my pillow, and within a few weeks I got a pus filled bump on my head. I went to a demotologist, and they did test and did cultures for fungus and bacteria the results where negative. The bump never went away, and six months later it spread to another area on my scalp and the hair fell out on that spot too. Since then the two spots have bled and filled up regularly they rupture about once a week with tons of pus. I\’m really at my wits end don\’t know what to do I don\’t want to take accutane for free of liver damage.
Hi all, this is jeremy again. I recently got liver test results back and it is back to normal, so the accutane did not do irreperable harm. I appreciate ur comments josh, but unfortunately my hair loss is so severe it cant really be totally covered.I am currently taking clindamycin, rixafin, and prednisone steroids.I would not be surprised to be back on accutane soon.I too am a good looking guy and a ladies man, but this has not helped me by any means. Anyway i am interested in more natural remedies. Short of rubbing feces on my sore head, i would try it. God bless u all, and may u be cured.
Wussup all,
i thought i was the only one with this stupid disease. I have had DCS since I was 16 and im 19 now and these bumps have just been killing me. I have also went to a dermatoligist and got cultures of the bumps and they also turned up negative. I am currently taken antibiotics and also been washing my hair with this soap called Hibiclens and i can say that it has its affects but still after awhile they jus start showing up again. I have also been losing hair in those spots where the bumps are and i tell you that that pisses me off even more…who likes walking around with random bald spots on there head? its so not attractive..so if anybody out there has any solutions that has been succesful please email me at Jr_mamea_50@yahoo.com.. I feel for all who has this disease because it really sucks.
hey. Phil from England again. thought I would say hello to all of you that have since added to this forum.Still afflicted, been taking Doxcyclin for the past two months, it cleared up but has come back with a vengeance since stopped taking the pills. Will get some coconut oil and start taking that. Cant believe I may have to take antibiotics for another extended period….Heads up to all the fellow sufferers out there.good to know this site still going and i will check up on it more often now. BTW I am a white 37 year old male with a passion for reggae music – so much so that my girlfriend laughs it typical that I go and get a disease more often associated with Black people!X
Hi, my name is Tyler. I am a white male, 21 years old and I have had dissecting cellulitis for 3 years. I never had acne as a teenager and have never had problems with acne like symptoms. I’ve tried cephalexin, doxycycline, ciprofloxacin, and steroid creams. The cephalexin worked beautifully at first and got rid of the bumps for about 5 months, but then they came back. Next up was doxycycline, and that didn’t do anything for me. I am currently on ciprofloxacin and it seems to be drying up the area and making the bumps smaller and less painful. The doctor wants to start me on accutane, but I am very apprehensive about all the side effects because I am a college baseball player and I don’t need anything else to worry about. Also the accutane doesn’t seem to have a good record with completely getting rid of this annoyance. I have read in multiple postings that benzoyle peroxide can be successful against DSC, so I am going to try continuing the ciprofloxacin and I am going to add Proactive (benzoyle peroxide is an active ingredient). Right now I am willing to try anything (except accutane) to get rid of the bald spots and the painful bumps. I just want to be able to go out in public without wearing a hat. I will post on here again in a couple of weeks to give an update of how this combination works.
Jeremy,
I’ve gone through a lot of natural remedies only to be dissapointed. I’ll list what I’ve tried, Tumeric, sulfur, olive leaf extract, tea tree oil, manuka honey, ginger, oil of oregano, and colloidal silver. I’ve used these in three month increments and and combined in many cases silver applied both topically and internally did show a little improvement, but results didn’t last.
Everyone here,
If we are to find out what causes this which at this time is a mystery to the medical professions we need to see what are common factors. I bought a minpin from a pet store about three weeks before this began. The dog was sleeping next to my head on my pillow. A few months before that I had bought a new supply of minoxidil from costco, but I had been using that products for at least 8 years with no problems. When I was 18 my apendix ruptured and I was in the hospital for 8 days on anibiotics for a massive infection. I went to a dermatologist who used a needle to get at the puss in my scalp when one of these bumps first appeared it tested negative for bacteria and fungus. I thought I had ringworm at first, but after the test and cultures the doctor couldn’t diagnose me. I don’t really know what to do mine seems to be getting worse. 1 year 4 months into my first boil, now I’m at three painful sores. Help please help. BTW I stopped using the minoxidil once this started, and within three months my hair began to thin out to where I guess I would be naturally.
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Dissecting cellulitis of the scalp treated with rifampicin and isotretinoin: case reports.
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SEE MY PREVIOUS POST NO.31 WITH LINK . Anyone heard of or taken Rifampicin?
Phil.
Hi, thanks george for the input. If everyone means rifampin, thats what im taking. It does help, but a cure it is not. Has anyone ever had hair grow back on the places where they have bumps? I fear the answer is no, but i am curious. I have tiny cuticles there, but no growth.I still say accutane, or isotrenoin in generic form, is the best, but a cure no. God bless and i sympathize this is awful. jeremy
Hi All, I last blogged at this site on January 4, 2009. My son is home this week on his college Spring break. Since the last time I blogged, my son’s condition has worsened. He did “try” some of the natural products I was able to find for him at a local health food store. The Neam Shampoo seemed to help him somewhat. The largest scalp lesion went down and hasn’t yet grown back to its original size, but it is painful and I notice my son scratches and picks at that spot. Unfortunately, he has quite a few “small” bald spots that developed at the crown of his head, the back and even one starting hear the front over the past two months, and he has a pretty big one right next to the first spot. He’s beginning to withdraw in college and sitting in the back of his classes because he can’t wear his hats in class and doesn’t want anyone to see the scars. I wonder if I can get a doctor to give him a medical note to allow him to wear some type of head covering during class. My heart breaks as a parent because there is nothing my husband and I can do to make this any better for him right now. We are scheduled to see another Dermatologist as a well-respected practice in East Windsor, NJ tomorrow afternoon (an hour and a 1/2 ride from our home). We want a second opinion before dealing with the first Dermatologist’s recommendation to put our son on Accutane. Because he attends college in Virginia and doesn’t have a car, I don’t know how he’d keep up regular doctor appointments to have his liver checked, and what if he develops some of the other nasty side effects like Depression? We won’t be there to see the signs or help him through the rough times. There is no way I can have him on Accutane so far from his family. This is just aweful. None of the officials at the school know yet about his condition because he refuses to talk about it much. Someone asked about race, we are African American, US-born citizens with no history of this disease on any side of our family. The only common element we found is that there is a history of severe Ezcema from both my husband’s family and mine. My son is 19 and first developed a small bump last June 09. By his Christmas break, he had been on antibiotics twice and had the largest lesion lanced twice and injected with Steroid shots.It just keeps coming back. I too, have been combing through all kinds of websites reading case after case trying to find a common thread that will shed some light on the origin or a cure for this aweful disease. In quite a few cases, there seems to be some pre-disposition to Ezema (hope I spelled that right, I’m tired right now). Other than that, I can’t find any other common denominator. I am surprised to hear more and more cases of Caucausian men who have this disease and also I’ve heard of three young women. One as young as 14 years old. Although I bought other “natural” products for my son to try (like the Coconut Oil, Mataki mushroom capsules), he has not “consistently” kept up with any of it, so he taken it long enough for us to determine how effective it might or could be. He’s a typical 19-year old and while this is very uncomfortable for him and embarrassing, it’s still not enough to keep him on a strict schedule to take all of this stuff. He just wants to be a normal, happy college student. He’s angry that he has to deal with this. I am praying for you all. I will blog again after we go to this specialist. I fail to accept that you are all doomed to this terrible disease for life. My next option will be to start writing to Dr. Sanjay Gupta, Oprah or to anyone who can put the national spotlight on this disease that is so unknown to millions of people who are not personally touched by it. My son was one of those millions of people six months ago and now like you he’s living a nightmare. That may help us to get more research for better treatment or a cure. That’s how folks started getting more attention and research for Autism, etc. We have to brign more attention to Dissecting Cellulitis. Anything is worth a try at this point.
After researching the internet constantly, its nice to find a blog here that is currently active and deals with this condition. I hate always circling the same few sites from 3+ years ago with unconclusive results.
I’m personally a white male age 26 and have been dealing with this for 4 years. (maybe longer, but thats when i started loosing some hair). I haven’t had the condition nearly as bad as some of the people here, but I completely feel the social insecurities because of it. I don’t have big lesions on my head. Its more just a thin bumpy layer accross my scalp, primarily the top, and what seems to be permanent red bumps at the back neckline. I started becoming worried around the time I started loosing hair, starting with a thumb sized patch in the middle-top of my head. 2 others similar areas popped up, and over time kept expanding. Now i have a long baldarea on top of my head, from the back almost to the front. Its confusing, becuase its not a typical male baldness pattern. I have dreaded getting my hair cut for the past 4 years hoping that at the end i’d still have enough hair to cover the area up. I’m basically on the border point now, where its just barely enough to cover up without looking bad. But the effort to get ready now, just to do what i always did easily in the past is unreal. I hate how much time this damn disease wastes of my life, feeling completely helpless. I’d even taking shaving my head as an option just to accept being bald, but with this condition, my scalp is would look awful being fully exposed. Its amazing that bald guys in their 20’s think they might have it bad being bald, but at least they have the option to look normal bald. I hate how my life is just a ticking clock until i no longer have enough hair to still look normal, and a disease that will not be cureable anytime soon. I’m at the point in my life where i want to have a career and a good life and I’m lucky to have an amazing girlfriend. I hate how this condition takes such a toll on shelling up the person you really are.
Hi,
Was speaking to my brother and he has had it really bad but now deals with it quite well. When he first had a few big lesions he said the best way he could get the hair to grow back was when the dermatologist would give him Cortisone shots in the larger lesions. Doctor said it would help the scar tissue. Drinking Aloe Vera has helped but you must be be consistent or else you will fail. Most of those medications don’t offer any help. Trust me he tried them all:)
Hi All,
We took our son to a second Dermatology specialist in East Windsor, NJ. The diagnosis for Dissecting Cellulitis was confirmed. My son started on Accutane this past Saturday, 40mg. during the day and another 30mg. at bedtime. He’s got the typical dry mouth, nose burns at times, The first two days on Accutane really make him tired all the time. He’s talking better the last two days. He is following up with a doctor closer to his campus in Virginia. We are taking this one day at a time and staying positive. Still looking for new research on a cure, or at least the “cause” of this disease. Staying positive and prayerful for him. Until the next blog, well wishes to you all.
Hi All.
Here’s my 2 cents.
I started having DC around 7 years ago. I am now 32. It started on my back, then the crown of my head, then my lower back and then onto my face; large pus filled painful lesions.
Some doctors diagnosed it as nodular acne, others D.C
I have tried all of the above including the Accutane, which worked to a degree. The lesions still appeared but not as large or painful or as many as they once were.
Onto what I think everyone should try.
For the past 2 years Ive been relatively lesion free. I do still get a few once in a while but they are manageable.
2 years ago after doing extensive research on the net, I decided to undergo a food intolerance test. The company mails you a kit for you to return a blood sample. Anyway it turns out that I am very intolerant towards wheat. This includes bread, pasta, cookies, any ready made meals, white flour, pizza etc.
Wheat I have found is a major cause of inflammation in the body and this can result in the skin which is an organ in itself discharging the toxicity.
Now the results showed I was also allergic/intolerant to Eggs, yeast, dairy, lentils and some shellfish. It took awhile but I have now completely eliminated these foods from my diet and my skin over all looks alot better.
However now I am looking into getting my head as smooth as possible to be hat-free. I dont mind about being bald so now I concentrating on the scarring and alot of keloids which has been left. For anyone that has keloids to as a result of this disease I have discovered a company that has invented a new method of cryotherapy where instead of freezing the scar on top, they inject the scar so that the liquid nitrogen can pass internally therefore minimizing additional scarring.
Ive got so much info to share, but Im running out of time today, I’ll come back soon. But to add I also stay lesion free with a daily skin care regimen: I wash my head and face with a parabens, perfume and SLS free facewash, I then completely cover my skin with a 2.5% benzoyl peroxide, very generously to say the least. I then wait 1/2 hr then apply a moisterizer. Be very careful when selecting a moisterizer. You need one that clearly states it is non-comedongenic which will not block your pores. Finding the right one for your skin type is trial and error but dont give up.
Conclusively, you can get this thing under control with dogged persistance, determination and personally for me with prayer. I can control the lesions now with the info above, if I slip it starts over.
To add to the above, there is no overnight cure. The skin takes time to heal, therefore do not expect results with anything you try taken topically or internally for at least 6 months. This is including if you are allergic to any food groups also.
Another point re:accutane, towards the end of my course I began to slightly hallucinate, my wife then insisted that I stop taking the tablets. So be warned, its a very toxic drug and contains a high dose of synthetic vit A. DO NOT GET PREGNANT, DO NOT GET ANYONE PREGNANT. Causes severe deformities.
Anyway will share more later, gotta go to work
I have been dealing w/ DCS for about 6 years now. I am a 24 yr old black male. I have also tried “all of the above”. nothing seems to help my symptons except for the steroid injection to the swollen area of my head(scalp). It is relief for only a few weeks, sometimes days. I think we gotta find the cause ourselves in efforts to find a cure……………………
p.s.
anybody ever thought that this was something we came in contact with in a dorm room like setting?? community living?
most cases i read about are college students!!!!
My son started staying in a dorm room in August 2008. He had his first small lesion starting in June 2008, but interestingly enough he was commuting daily to a community college for a while. Interesting theory. Other bloggers seem to have had some close contact with dogs. Accutane is a monster. My son has been sooooo tired from day one of taking the medication,so the doctor had to take him off it a few days. He’ll be starting back tomorrow. His poor mouth and lips are so dry and sore all the time. It’s hard for him to smile at all. We’re just waiting for his first blood work to make sure he’s healthy on the inside. Controlling your diet seems to have positive results with a lot of disorders. I’m trying to get my son to take B-12 vitamins, since he can’t have Vitamin A, and to get a little extra rest every day and try to adjust to a healthier diet also. It’s hard for a college kid to even “think” about going to bed earlier or eating healthy food. It’s pizza and microwave junk food all the time. I still think the Neem Shampoo made some difference and helped reduce the size of his largest lesion, but that’s hard to confirm. Until next time- good nite.
I posted a LONG time ago. My teen age daughter (caucasian) has DC. She has been on Accutane twice: she has been off for 2 months now and we pray that it will stay silent. I thank God every day that I raised a beautiful child who, although she lost at least 1/2 of her hair on the occipital region of her head, never freaked out . . . just put it back in a pony tail and kept it covered. Her loving girlfriends would “fix” her tail if some of the bald areas started to show. When her hair began to grow back it was KINKY KINKY KINKY. Her AA girlfriends would gently tug on it and tell her she was a soul sister after all . . . Teen-age girls DO NOT deserve all the bad press they get, they were so supportive of my daughter.
Accutane does work — permanently? I don’t know. I am hoping that soon the clinical trials regarding laser therapy will be published and that therapy will be more widely available. I have talked to our dermatologist about using this if the lesions reappear.
One med that was very helpful was for my daughter to take an Omega 3 fatty acid during treatment. The type I gave her was “Coromega” — it’s an orange tasting paste, and you don’t burp up fish oil. She had to stop the Accutane because of elevated triglycerides — once on Coromega they stayed down.
Rimfampin is an anti-mycobacterial drugs that has traditionally been used to prevent or treat TB. Has it’s own problems, but if it assists others in getting over this disease, HURRAH!
Karen and Brian; my prayers are with you, it is very difficult to have your child go thru this. Accutane is a very frightening drug to read about, and having your child on experience this condition is a double whammy. Let’s just hope that soon more research will be done!
Hello All,
Brian and Rita, thank you for blogging. As scary as DC is, it is so comforting to me to hear how others are coping with this aweful disease. Brian to answer some of your questions as much as I know today, there is no known origin for DC at this time and no cure has yet been identified. The alepecia that occurs with each spot is permanent.DC is not contagious. As for alternative treatments, I am still exploring how else we might treat my son. He is having a really tough time on Accutane. He’s now missing classes at college because he’s just so tired all the time. He recently suffered with a bad nose bleed from the “dry nose” side effect that is common with taking Accutane, his mouth and lips are so sore that he can hardly get the proper nourishment in which scares me, because you need to eat while taking this strong medication. I can’t wait until next Tuesday gets here. It will be his first appointment to have his liver and blood levels checked. My son has opted to come back to NJ at the end of this semester for good. His self-esteem and social life have been GREATLY affected and he is sooo angry about all that this disease is robbing him of.
Rita, can you tell me more about the Cormega?? How do you take it and how many times day? Is this a non-herbal product? I understand that my son is not allowed to take any herbal supplements or supplements with “Vitamin A” while taking Accutane because of possible overdosing on this vitamin.Can you tell me anything else about Rimfampin’s side effects?
This disease seems to be hitting more and more age groups and ethnicities outside the 19-40 year old African American male population that prodominently is plagued with this disorder.
My cousin’s son has a 14-year old friend that recently shared with his classmates that he too has this disorder and asked them to pray for him as he goes through the harsh treatments.
I wish my son had someone with this disorder that he could talk to. He really doesn’t want to talk about it, and is shying away from his college classmates way too often. He is anxious to return to NJ to be around family and friends. While I’m sad that he’s leaving Norfolk State (he had such big dreams for finishing college and starting a life in the South), but as a mother at least I will be able to ensure he eats properly with the Accutane. Eating greasy college food is certainly not helping him at all. Brian, one final bit of information is that besides laser therapy (which I really would like to know more about), the ultimate “cure” if you will from all that I’ve read if a full scalp excision. Not an option my husband and I even want to think about for our son.
I remain hopeful and determined to help my 19-year old beat this thing. Stay strong everyone.
this disease just started with me last 6 months and its spredding .. i tried alot of medications but it dosent work .. what are the causes of this problem? do you think itd about the diet or protein shakes?
Hi my name is tommy I live in Pennsylvania and ive been dealing with this for 4 years now and it is such a horrible disease and I feel so bad for anyone that has to deal with it. Im now 22 years old and I find this condition very hard to deal with its hard for me to start my life cause im not sure how people are going to handle it. I keep it from alot of people and wear a hat every day to cover my head it has affected my life 100% to where I almost wanted to die. You pretty much feel like you cant enjoy life anymore. If anyone can email me just so I can talk to someone that really knows where im coming from my email is thomaskrape@yahoo.com that would be very helpful. Im on accutane right now and I have been only taking it for about a month and have read alot of bad things about this medicine it has alot of side affects. thank you for your time and thank you for anyone that reads this.
thomas
Hi,
I have actually ben diagnosed with this condition today. I’m a White 30 year old English man. I have several lumps over my head. My Dermatologist has prescribed 2 strong antibiotics of which I will update you with the names when I pick up the prescription. He also wants me to go back in 4 weeks for steroid injections into the bumps. reading some of the posts it has scared the life out me. The only thing I can think or maybe link it to is that I had an ear operation, where they took a graft of skin from just above my ear. That was December 2008, This started January 09 for me.
I think guys and girls sometimes things are sent to test us, the back of my head looks ugly, but lets draw our swords and fight this thing together. Anyone else have surgery at anytime before they discovered this?
Hey everyone its good to see this site is still up. I just want to tell everyone that is coping with disease to stay strong and keep posting these responses because the doctors have no dang idea what to do, so we have to take this upon our self and work together on this. I have had this disease since i was 17 and now im 20 and i am Samoan(Pacific islander). My case wasnt severe but it was still bad. what i found that worked for me was that i started to let my hair grow out and washed it 3 times a week with selsun blue and twice a week with hibiclens(a special shampoo my doctor perscribed me). I was also put on some antibiotics called Minocycline for about 2 months and it seemed to work while i was on it. but yeah its been almost a half a year and i havent had any sore bumps filled with blood and pus on my head and also no hair loss. Best of Luck to the people and the families dealing with this disease. I will keep you ALL in my prayers. Jr_mamea_50@yahoo.com
Its good to see the site is still up. Stay strong everybody and i will keep ALL of you in my prayers.
Hi I know the doctors seem to say they don’t know where this comes from , but something I thought of, that about a month before I got this I had an operation where they actually made an incision into my scalp for an ear operation. Could it be linked to bugs in hospitals? Jr you work in a hosptal? Anyone else been in before they got this?
yeah that was me..Not going in to too much detail on this forum but i was a kidney patient in 2005. 1 month intensive care with LOTS of tubes into my body at various sites. 2 weeks recovery ward….they removed my cafater saying i would be able to go home after a couple of days..next day i got very ill vomitting, sweats, temp…some form of bug. they dosed me with loads of drugs and kept me in for a further week.2 weeks later i went to my gp with painful bumps on my crown…he told me it acne and prescribed acne cream ( didnt get) 3 and half yrs later i have bad DC.. Have just sent my entire 170 page med.records to solicitors to trawl through….just a slim chance that i might prove i didnt have MRSA upon arrival but caught it towards end and there is a relationship they believe between DC and MRSA somewhere along the line….at least that a possible theory i believe…
@ garry I was treated at Wythenshaw hospital, Manchester
…… I feel a combined action coming on perhaps????hmmmmm….
My Doc has recently talked to me about Humira (adalimumab)and there was a case as having been succesful, anyone tried this?
Hello it has been awhile since I have posted just wanted to give an update. I have been on accutane for six months now. Each day I take 40mg twice. It took about 1 month before I began to see any results. The cysts have become smaller, and flatter. Some hair has began to grow back. They have not been inflammed or full of fluid for several months now. My dermintologist is hopeful,and so am I. Each month I have blood work done to check liver function, and trycl. levels. So far they have been slightly elevated, but nothing to be concerned about. I hope that my condition will continue to improve. And I hope that all of you will find a treatment that will work. Just stay positive, and keep praying for a cure. Prayers have helped me I believe they are what is healing me.
Hi All,
Bored at work and ran across this site. I am a 31yr old white male. I have been dealing with this since 17. I have been on antibiotics for 15 years. I tried accutane many years ago with no success. I feel the pain of everyone that has posted on this site. About a year ago after realizing no solution to this problem and losing so much hair that I was unable to cover it up anymore…I decided to go for the whole “fake hair” thing lol. If you havent thought about it do yourself a favor and think about it. Hair pieces have come along way. I was a bit hesitant at first but now I couldnt live without it. Its a bit pricey but it sure helps my self esteem. DO NOT go to new image. Try to find a small place that does better work. I will keep reading what you guys post. Gotta go home…Ill post again.
Just got home and couldnt get this site off of my mind…Id like to talk to all of you. Please feel free to email me anytime. Ive got 15 years of this horrible disease under my belt. imprtdrvr89@hotmail.com
Has anyone tried laser hair removal? Below is a case that seems to have helped this AA individual.
ABSTRACT
Background. The scarring follicular disorders pose challenging therapeutic dilemmas.
Objective. Hair removal lasers have recently been shown to be efficacious in the management of these disorders.
Methods. We present a young, Fitzpatrick skin type VI African-American patient with recalcitrant folliculitis decalvans, whom we treated with the neodymium:yttrium aluminum garnet (Nd:YAG) laser.
Results. A remission of folliculitis decalvans was successfully achieved using the Nd:YAG for laser depilation.
Conclusion. Based on the optical properties of light in skin, the Nd:YAG laser is the best for laser depilation in dark individuals.
Oh man I wish I found this site A year ago. I have been miss diagnosed so many times it sucks. I’am glad I found people with the same problem. whatever you do dont get surgery. I thought my hair would grow back but it didnt. I was left with big scars on my head, plus the hair loss from whatever I had. My doctor told me he took out 5 4 inch long ingrown hairs, and it was gonna be a reaccuring thing. Well symtoms are coming back and I did my own research and it looks like I have dissecting cellulitis, I no I do. I leave for basic training in a week, Does anyone no if I will get kicked out for it. Its minor compared to what ive seen. Any information would be awesome
It’s me again, sorry I have not posted for a long period. My daughter is almost 16 now. She has been off of Accutane since February. Luckily we have met up with a Physician’s Assistant at the Dermatologist’s office who is marvelous. My daughter has what I call a “sentinel” node on her head that pops up — when it popped up in the beginning of the summer, I spoke w/ the PA, who agreed that to go on Accutane a 3rd time would not be advised. I asked her about laser therapy, and faxed her the article referenced above.
After she did a further lit review, she instead suggested “photodynamic therapy”, in which the affected area is painted with a special medication, and then after a period of time, the area is exposed to UV light. You must avoid direct sun for 48 hours, and the site can get very tender. This therapy has successfully been used for nodular acne, and hidradenitis suppuritiva: these are collectively called the follicular occlusion triad. Insurance may or may not pay for therapy (I’m still waiting to find out)
ANYWAY, my daughter had one course of this done: she experienced intense itching at the site, but little other discomfort. The lesion went down, and has not come back. I need to get her in for another treatment, but it has been difficult during the summer.
I will let you know if this continues to be successful, and if insurance pays. However, ask your dermatologists about photodynamic therapy!
You all remain in my prayers — Karen, I hope your son is doing well.
Rita
Oops! One more piece of advice! For dry faces, Aveeno Calming facial mosturizer — and for lips, and faces as well — Aquaphor. You can find each at any drugstore. These products brought my daughter great comfort during the Accutane treatment.
Hi,
Been a while since I blogged here. My wife went to a natural herbalist. She went for herself but I told her to ask about something for me to take for DC. She described the bumps and what comes out of them. The herbalist seemed to ask a lot of questions like are they hard, soft what comes out etc. This is back in January.
She told my wife that I should stop drinking Milk. She also gave me the following to take. Bellis, Sulfer D12 and Pro Biotics. I did what she said and stayed off milk that I would drink pretty much every day. I have two young boys so the house is always stocked full of milk:) I would still have milk with Coffee and would still eat things that contained milk as well though.
The results very pretty evident right away. I didn’t get any more new bumps and all the small bald patches I had grew back the hair. I even had one large lession that I had gotton that bled for a long time when it was drained and it also grew back hair.
I wouldn’t like to say that I am cured but I don’t have anymore pain and no new bumps anymore. My head looks normal again. I have had this problem for a number of years. I live in Finland so I will try to get the correct names for the drugs. I haven’t been taking them regularly since maybe April. When I get a chance I should take some pictures and post them. If you havn’t read my blog posts I am a 30 Years old Black American(born to Jamacian Parents).
I think the drugs helped a lot but I am scared to start drinking milk on a regular basis again. If someone wants to try this treatment let me know. Take some before pictures and after. I had only one or two before pictures but I was taking them myself with a camera phone but you can only see 1 bald patch.
The best part of the natural medicine is you don’t mess up your liver and all those side affects. My next haircut I get I will post some link to some pictures.
Best Regards,
Matthew
Hey Matthew iam definitly interested I cant wait to see some before and after pics
I’m a 27 yr old African-American, male that has been dealing heavily with this condition over the past year. i have no family history of this and often wonder ‘why me?’ Daily I drain sores and lesions on my scalp and have to cut my hair every other day. This is very depressing and frustrating. I’v been reading the post here and comptiplating of posting my own. I finally muscled up the strength to post and cry for help. I am heavily considering the laser treatments, but i’m very intrigued with the natural oils and diet regime mentioned by Matthew and Clive and would like more information.
Matthew and Clive please contact me so I can inquire more from you. Thanks
gbook13@yahoo.com
All of you have written how my life has been for the past 5yrs from the pain, the oozing, and the humility. It’s frustrating when people don’t realise what we go through, so I’m glad I found this website. My DC started when I was 25 and I’ve had all the medications, steroids, and creams with no luck with any of them, the surgon is finally going to incise and drain. I’m looking forward to not having to wear a hat or a beanie everyday, with a freakin dressing underneath. It’s humiliating when you start oozing at work or when your out with friends in public……So I can’t wait for the relief of surgery…….If anyone wants to exchange stories you can find me on facebook or email me at mitchell.rodges@hotmail.com (Facebook) – Laurie West (Australia, Townsville)
Hi,
Just wanted to say I got the all clear from the hospital today, they are amazed and the results and so am I. It is virtually gone and the hair is growing back all over. I was put on a 10 week course of: RIFAMPICIN 300MG ONE TWICE A DAY with CLINDAMYCIN 150MG, 2 TWICE A DAY. I also used NEEM shampoo available from Tescos in the u.k. I can honstly say I am stunned with how much better I am from having lumps like half the size of an egg to now having little pale like scars that have got lots of hair growing back I hope it brings you some hope! I went privately to see a consultant who has dealt with this before, so please have faith I hope you all fight it off. Sure the tablets do some funny things to you but well worth it! Take care
garrybryant@seoagent.co.uk Any one wants to know about the Neem shampoo email me!
Doctor gave me the all clear today, I have beat it with the medication he put me on and the NEEM shampoo. Keep fighting it everyone and have faith you will get te better of it.
Took ten weeks to beat it but it’s gone from my head!
Hi all, I’m glad I found this group. It’s good to finally talk with people that know what I am going through, without having to break down what DC really is.
I’ve just got out of surgery this week, with not a big change to the nodes or lumps on my head. I’ve had this now for 5yrs, and I’m tired from trying not to let DC control my life. But as tired as I am, I wanted to know more about the different oils people are using, face washes, moisturisers and anything else people are using. So if anyone who has used anything with good outcomes, even short term, that I could potentially use, could you please drop me a line on my email.
mitchell.rodges@hotmail.com
Much appreciated
It has been almost a year since I’ve posted. I’ve done Accutane, oral steroids, steroid shots into the postules, many topical creams and antibiotics. Shown very little improvement. When i first saw the Navy Dermatologist it helped alot but then eventually the Accutane messed with my liver too much so i stopped that treatment. I’ve had consistent breakouts. Mainly small postules but I get 4 or 5 of them at a time. I’ve had a pattern of breakouts when i go do field training so my dermatologist has come to the conclusion me being in the military training in the field so much, wearing a helmet, and weeks at a time with no showering along with extreme weather conditions makes it worse. I am now on limited duty and cannot do my job in the Marine Corps anymore. My dermatologist has put in a recommendation that I be medically discharged this summer saying the military caused it and that hopeuflly when i get out the breakout will slow down.
Hey everyone,
I’m a 23 year old male that has been suffering from this disease for over 3 years now. I’m of mixed race, my father is Scottish and my mother Japanese. About a year after being diagnosed with DC I was prescribed acutane, and took it for about 6 months with great success. Since being off the medication I’ve had very few inflammations, but my problem is, like those of you who have had success, I’m not entirely cured.
I’ve seen laser surgery mentioned quite a bit in this forum and i was hoping someone might have some information on a treatment they may have received? It would be a great help to all if we could get some kind of feedback on the matter.
As for how i contracted the disease i believe it could be a number of ways. My first bump occurred when i was playing baseball. I was a catcher for the later part of my playing days and i’d forgotten my helmet that particular night and was forced to use the teams. At the end of the game i noticed the bump on my head and drained it that night.
A few months later i had three or four of them around the crown of my scalp in what seemed like an overnight occurrence. At that time i was working as a mechanic and would regularly scratch my head with dirty, greasy hands, which may have contributed to the breakout.
Someone mentioned that they may have attracted it while being operated on in the hospital. I’m unclear about an exact time frame, but several months prior to my first breakout i had an operation on my scalp.
Thank you to everyone who has posted, and like the rest of you, I’m very happy i found this site. Keep your heads up, we can beat this thing!
Thanks,
Riley
u guys should try “lamisil” orally for around two months!or a long period of “accutane” ask the doctor i had the same treatment and drastically reduced the inflamation and is hardly noticable!!
im from malaysia. i think i have this condition. was diagnosed with sebaceous cyst. search the net and found this condition. i think i have this condition just looking at the pic i search on the net. been having this for 5 years now. started slowly and worsen now. have a small surgery to remove it. it help cure that spot. n my hair grow back. but other part of my head just getting it. sometimes it burst and heal and grow hair back and come back. cant stop touching my head. can be painful and difficult to sleep. glad i have caring girlfriend but im tired of listening to her suggestion for me to try this and that. just need to know what the real treatment should i get. sorry for the bad english.
Radiation!!!!!!!!!!!!!!!!
anyone had this done or suggested? my doc said we can do this as an end all. all my hair will be gone forever, but apparently there has been much success with this. A good option if you dont mind being bald.
I am currently trying photodynamic therapy.
Hope this helps, God bless and ease all of you who suffer with me in this difficult condition. E-mail me at Deebenk@aol.com if you want to talk or need support.
I have not posted in a long time, I apologize. My daughter has had two courses of photodynamic therapy. It has been WONDERFUL. After the first course, she had the sentinel lump come back, but after the second course, NONE!
At first our insurance denied payment, but the Dermatologist wrote a letter explaining the benefit of it over Accutane, and now they are paying for it. The plan is for her to recieve a course every 4 – 6 months.
I hope this is of assistance to all of you dealing with this.
Also, my daughter has no patches of baldness. All of her hair has regrown, in fact, it is down to the middle of her back. The hair growing from the areas that were affected are curlier, but who cares????
Hey Folks,
I have this cellutis condition and I know exactly how I got it. Being that I’m a little tall, at work a few years ago I scraped the top of my head on an entrance way in an aircraft. At the time it hurt pretty bad but it appeared to be just a scrape and nothing serious. My theory is that when that happened, I was infected with a germ that I didn’t attend to immediately so over time the scrape became infected and now I’m fighting off this infection. I did alot of research on this condition and I stress “Condition” because I’m positive that I will rid myself of it at some point. What I’ve learned is that the infection attacks your skin and scalp obviously, but what happens is that it forms these hairless patches sort of like an orange peel that prevents your hair from growing thus leaving you with bald areas. For a few months I’ve been taking Bactrim DS which has help somewhat but has not solved the problem. I just got a new prescription for Minocin or Minocycline which I will try…I would strongly suggest doing research on these medicines, I know the condition is frustrating but the last thing you want is to deal with something like a liver condition due to a certain medication. Also try whatever natural remedy you can find, it wont hurt, plus they wont give you extreme side effects. Look up Golden Seal, Echinacea and Folic acid, these may serve as natural combatants to this infection.
Good Luck Guys and Hang in There!!!!
Im a 19 year old hispanic and Ive had this around a year and i think i found a combination that helps. Soak towels in hot water then get a bar of antibacterial soap n rub it in with a hot towel. After this i get sulfur which you can buy anywhere and put it all over my head n leave it over night and by the morning my head looks alot better.
Ive taken around 6 different antibiotics and they didnt help at all, i would skip this step entirely and go directly on isotrentin or accutane.
I am a male, 29 year old Caucasian.
I started to notice some things in my scalp in April or May. Originally I though I just a zit or two on my scalp. I drained them and didn’t think much about it. A few weeks later, my wife told me I was getting a bald spot. I just laughed it off. As the summer began I was picking at my scalp more and more and my wife and I started talking about me seeing a dermatologist after our vacation. Towards the end of the month long vacation we went to wedding and saw a friend of mine who is a podiatrist. She noticed the back of my head and asked how long ago my head injury was. After she looked a little closer she thought that I had two sebaceous cysts. I made an appointment when I got home and was expecting to have them incised. When I saw the derm he made a very quick diagnosis of Dissecting Cellulitis of the scalp. He gave me steroid injections in the two larger affected areas, and prescribed a one month course of Minocycline. When I asked him about the condition, he wrote it down and suggested that I do some internet research. Which I though was odd. I have been to Garry’s site and I would say that the level I am experiencing is a bit less than his. Seeing that his has been solved for now gives me hope. I am skeptical about my current treatment and if it is not successful I think that I may suggest the treatment that Garry followed. I will keep you all informed.
Hello I’m Andre, a 24 year old male from Jamaica the caribbean. I developed this condition of Dissecting Cellulitus when I was 19, so thats 5 long painful, disfiguring, and self conscious years. I am pretty much up to every suggestions. What I would like to add is this: We should all focus on praying to God and ask him to rid us of this ailment, or better yet give us the cure. Secondly, there are treatments that are not regulated by the food and drug administration that should warrent a try. its always good to have a cleanse, so make sure to find one that is suitable for you and do it asap (i would recommend the lemon/honey cleanse). thirdly, the disease causes the body to produce an excess amount of androgen hormones, so the best thing to counteract that is taking a multi-vitamin. a multi-vitamin helps your body regulate hormones and keeps evrything in check. and chances are a lot of us aren’t taking any, and it is just not possible to live in this society and get adequate vitamin intake from our foods. Its also best (if possible) to omit dairy products from your diet, most of us are allergic to diary and we just don’t know it (as a memo: it is possible to develop an allergic sensitivity at any age). after dealing with these steps you should see signs of improvement with the skin as i did. fourth, its best to suffocate the legions because it gives the body time to metabolize. I suggest if it ruptures to put an antibiotic ointment on it and cover it with a bandaid (as a memo: practicing good hygiene is vital in keeping the legions from spreading, and remember never to pick at it, thats a sure sign of having it spread. lastly, make sure to drink adequate amounts of water, 8 to ten glasses a day, or if we want to get technical, drink half your body weight. when I was practicing these methods i realized that the acne went away for about 8 to 10 months, when i took a chill pill, i realized the resurfacing of the deadly beast bka Dissecting Cellulitus. so now i am back on the regimin and it seems to be going as planned.
P.S. you should drink a glass of Lemon water first thing in the morning, this also helps the oxidation process in your body. And finally let us all put our Brains together and work until we find a cure, because medications are designed for intake indefinitely. We can do it, I have faith
IN JESUS I TRUST
Hello!
I have a 24 year old son that has DC. I have taken him all over the US trying to find a cure. He has been diagnosed for over 8 years. He has taken lobg term antoboitics daily and will continue them for the rest of his life or as long as he can. I am thankful that I found this post and will use it often. My one question is has anyone sign up for SS benefits? My son has always worked but this past year has been very draining, depression is getting worse and I would like for him to keep his mind focused and enjoy what he can in life daily. He had to give up most everything, he loves sports and had to drop of the football team because he could not wear the helmet. Same for most other sports. He would not attend college because of DS he worries that people can smell/see the scalp. I am going to try some of the natural items noted above. He has tried all the meds listed without success.
I think we should all get together and send a letter to Dr Oz, Oprah, anyone that will listen!!! Dr Lloyd King is at VU in Tn and he has been researching this for many years. May God bless each and everyone of the persons with DS. I can say this, as a parent is so difficult, my son was one of the most outgoing and was most popular in school, it has taken so much away from him. I wish I could take it from him so he could get back with his life. It is heart breaking when you see such a handsome young man ashamed to date because of this.
Hello everyone. I am a 30 yr old white male with Dissecting Cellulitus. I have had this disorder for about five years. Like everyone else I have tried everything. I have not tried acutane but think that I am going to. Some things that I have noticed with this disease is cold helps. I lived in a colder climate(Maine) then moved to a warm climate(Florida. The whole time i was in Maine the condition was mild very small bumps here and there on my scalp. When I transferred to Florida with my job, my head exploded with nasty leaking bumps all over!! Another thing is the smell. I have found that of course two showers a day helps but in a pinch put Purell hand sanitizer all over your scalp. There will be a little burn but the smell is gone. My hair is short so it helps.
I am looking into natural things such as vitamins and cleanses if I come across anything I will let everyone.
i was just diagnosed one week ago after about ten years of going form dermatologist to dermatologist. i have suffered with this problem for about ten years. i had done research and kinda knew what i had,just could not get a diagnosis. this was the first doctor to actually do a biopsy. i got a shot of kenalog 40mg and started on clarithromycin 250mg twice daily for two months. wash hair twice weekly with nizoral shampoo. i’m a 44 year old african american female. i don’t know if anyone has had any positive results from this treatment. would appreciate any feedback. thanks
Hello all!
I just got a message from my son that he has a break out/lump on his chest. He is a 24 year old white male that we have been told this is rare for him and his type has only about 12 diagnosed in his age/gender. I am so scared and worried. This has been going on for several years. I am trying to talk with him about signing up for his SSDA so he can get insurance. He had insurance until this past month and that was as long as he could stay on my insurance. His job does not offer insurance. Has anyone tried to get insurance after being diagnosed with DS?
Please! Angela, Pamela — ask your dermatolgist about photodynamic therapy! My daughter has had 3 treatments in a year, with NO FURTHER BREAKOUTS!!!!!!!!! She had a node that would pop up, but not since her last treatment in July. She will be getting these treatments twice a year.
My heart goes out to all who don’t have the long hair to cover these lesions. Please please please ask you MD about this treatment. Please also note that even though insurance will not pay for this treatment if it is for nodular acne (which is in the same family as DC, as is Hidradenitis suppurativa) — after the MD wrote a letter to the insurance company and explained why they were using it, they did cover it for DC. PLEASE ASK YOUR DERMATOLOGIST!
You are all in my prayers.
My son has had DC For 5 years now 1st year was spent going from Doctor to Doctor trying to find out what was wrong with him. He been on a number of drugs over the last few year even Accutane with nothing helping, we found a Doctor that said lancing and cleaning out the nodules would help that he had treated it before so my son went in the Hospital had 3 Surgery’s in one week cleaning and Draining out te Nodules this seem to help for about 3 weeks then they came back more than before, so they started doing weekly lancing to drain the nodules then I read Drail’s post about the laser treatment in Detroit MI, by Dr. Iltefat H. Hamzavi, So in April 2010, we decided to take the 12 hour round trip to Detroit to have the treatment after the very 1st treatment I was so impressed the next morning all the nodules were flat and no drainage, they did fill back up over the next two weeks and he went back in a month and had another treatment this time it took a couple of weeks for all the swelling and drainage to stop, the next month he went back for a 3rd treatment he hasn’t had any new nodules or pain in over 4 months I will try to keep everyone updated on his results as time goes on but this is the 1st time that he has went this long without any new outbreaks.. It is well worth the trip.
Dr. Iltefat H. Hamzavi
Henry Ford Hospital
3031 West Grand Boulevard #800
Detroit, MI 48202
(313) 916-9100
Hope everyone can find some help.. Oh, Yea forgot to mention that his Hair is now starting to re-grow we are very pleased.. Kim
Hello again from the uk.
Please See posting above from garry.my consultant put me on combination therapy of rifampicin and clindamycin exact Same dose as garry and the improvements are fantastic.4 weeks into the ten week treatment.no More painful bumps .no weaping sores and hair is growing back.my consultant says in his experience this Works in 9 out of 10 cases.
rifampicin and clindamycin is the drugs my son has been on for about 5 years. The long term use of antibiotics caused this past summer severe side effects. His gut had no good bacteria and it was very dangerous. It has somewhat controlled the DS. He has been off meds from 12/02 and so far has done well. Needless too say it is a life long struggle and I must thank Dr. Lloyd King at Vandi TN for his help with this.
To everyone who reads this blog , I am a 32 year old man that has ds of the scaulp for the last 6 years with going through almost every treatment out there i can tell you there isnt much hope left for treatment. Ive been to 8 dermatologist reason being when you as a patient know more about the disorder than the doctor leave cuase the trial and error they put you through isnt worth the pain. have done everything from meds to bursting them to leak out the clots and for the last 3 years my head hasnt stop leaking blood sagranelis fluid and tissue but come back worse and more painfull. ive stop going to drs till i can find one in the boston area who is worth the mental pain of trying again to get this under control only treatment that i havent done is the laser witch from reading this some are seeing it work
the hardest thing about this disorder is 9 out of the ten people it may work ive been the un lucky one of the 10 hardest thing for me is i have two kids seeing i cant lay next to them on there pillow with out getting fluid or blood on there pillow kills me or having my 4 year old tell me that “dad your heads leeking ” it hurts there needs to be more work done to help peopl like us sorry if this seems like a rant im just tired and fed up mentally this is a fight every day. thank to everyone out there PS any one every try to get disability from this getting a job isnt easy when you look and have this
hello everyone, i also have been suffering from this disease for about 5 years, i wqould really like to know if the rifampicin and clindamycin treatment really work long term?
oh you can e mail me at j_too_da_j@hotmail.com.. thanks god Bless
well james not a cut and dry answer some people it does some it does for a while then stops they say the avrage is 7 to 8 out of 10 people it will work. in my case it did for bout a month then stpped even after increases all depends on your body hope it helps
howie
I am a 28yr old caucasian that has suffered with the disease for the last four years. Like all of you, it started out with just one little bump. I didn’t think very much of it at the time, but I began to notice that it just would not heal. Needless to say, things got worse quickly and my dermatologist actually had to go do his homework just so he could tell me what was going on. DS is such a life altering disease and I was absolutely bewildered when the doc said there was no known cure. I let myself become his “guinea pig” as there was no side effect that could deter me from trying to minimalize the damage that was happening. I’ve done the creams, the steroid injections, and two trips down accutane lane but to no avail. Finally, as a fluke, my doctor prescribed me Sulfameth (I have been taking for about 1 year) that I use in conjunction with Selson Blue w/ aloe vera shampoo. It won’t cure the condition, but it sent mine into remission with no side effects. As far as the hair implant, I have been told that it could work as long as the scar tissue wasn’t too thick but I’m just glad to be rid of the pain. I do regular blood work about every 6 months to make sure that my liver and white blood cell count is normal. I’ve just found you guys today while I was doing my own research and my heart goes out to you all. It’s laughable that with all the information and technology that we have, doctors still don’t know where DS comes from or how one contracts it. This condition is not in my family at all.
I am the mother of a 19 year old African American son, who has had DS for approximately 5 years. We have tried all types of perscriptive meds. Nothing last for long. I am so upset with this condition that has affected him. He is away at college in Indiana. On his visits home..New Orleans, La, he always has to return to his Dermatologist because of a flare-up. I am going to check into the Photodynamic Thearpy and/or the Laser Treatment.
Lets all stay informed and share our stories of inspiration.
I’m 19 year old male of mixed ethnicity (italian/black carribian/british). I’ve had this since I was 16. The first time round I had it, my gp treated it with in 8 months of erythromycin in late 2008 to mid 09. It worked a treat, however about 8 months after stopping treantment it started to appear again and by mid 2010 it was back and was quite bad. I was put back on erythromycin which helped but did not clear it totally. Eventually the erythromycin stopped working and I was put on lymecycline in dec 2010, I was also referred to a dermatologist. The new antibiotic seems to giving me mixed results. It has made the cysts smaller but they have not dissapeared. I saw the consultant last week 18/01/11 and he doubled my prescription. I’ve to go back in april to see if there is any improvement. I’ve been told if there is no improvement, they will put me on two different types of antibiotics one of which is used to treat tuberculosis!
I really hate having this, I cannot live life, I can’t go out to clubs with friends because I have to wear a hat all the time because my scalp is weeping. I have interviews for universities coming up and I have no idea what I’m going to say when they ask me why I don’t take my hat off. I’m depressed all the time, and this is probably making it worse. I’m really at the end of my tether. I just want to end it all now. I’m being held back in life because of this problem. I really don’t want to live the rest of my life like this. Does anyone know if this condition will eventually go away?, and are there any treatments that will properly controll it but wont do you any damage if you are on it for a long time?
The constant pain of this, the constant bleeding and puss, it’s no way to live. I don’t mind the bald patches, it’s the cysts that occupy the bald spot that’s annoying.
alright so lets start off with there is NO CURE!!!!ive tried everytype of antibiotics and they mess up your stomache really badddddd!!!!!!!its not the way to go neither is accutane ive tried this things even topical solutions the best treatment was accutane but you get alot of serious side effects and then it comes back!!!!!gayyyy!!!!sooo in conclusion i found this new therapy that alot of doctors have told me to stay away from which is photo dynamic therapy,but the reason i think these doctors dont want people to do it is so they can still make themselves rich off of diagnosing and making pharmaceutical companies rich which is pretty much what they are all about i have found alot of success storys with photo dynamic therapy and i am willing to try it cause everything else i have read about other treatments is pretty much bullshit and doesnt cure you, pdt from what ive read sustains it pretty dam well and i think you get to keep your hair,as compared to this other therapy with a nd yag laser where they remove your hair and look like a grandpa no way,,im speaking from alot of experience and i confused alot of doctors with the questions i had for them about this disorder which proves do they really know alot about this and trust me they werent no low grade doctors..anyways a shampoo i use that helps the scalp really well is tea tree oil by giovanni,and selsun blue its a clear bottle with salicylic acid and they usually have it at walmart hope this helps everyone on this page going nuts about this shit it sucks balls trust me i know but accutane NO!!antibiotics NO!!! treatments with the pdt?? yessss!!! also people who took antibiotics should really take probiotics cause all ur good bacteria will be gone you need it for alot of thing trust me on that!!!!
wow not shure how to follow up on this last post lol again if there was med that ut you into remition that 10th person it might not after 8 years and 3 years of non stop bleeding and puss and weeping and also 9 diffrant derms final i got a doctor who know what there doing theres a option for use that allot of ppl dont look at its called scaulp removal when your at your end and anything is better than what we live with there is this they take all of the bad areas (in my case 80 % of my scaulp) from my ear to ear and all the back off to bone andlet it scar over heal with out skin graphs basicly you look like a burn victum but no weeping and no pain after it heals ill take that over the leeking for three years everyone has there issues with this and we are all diffrant. to Lawrence its sucks and yes i deal with all those same thing you are going through but know this it isnt your fault get help see a councilor it help pain and mental scaring are a major part of this but we are all here to talk wantot see what i deal with on a daily basis email and ill share pics at executivechef26@yahoo.com good luck
Its final.We are all in this together. Finally a cure has been found….Jesus… I have suffered 2 years, embarassed,cried,didnt answer the phone,laughed at, etc. If you have this you know what I am talking about. So just shave your head, keep your head up, and thank god that we have another day to pursue our dreams. Trust me, there is somebody in the hospital dying now, praying to god that they could change places with us and have our disease. Dont worry,most people think about themselves most of the day anyway so what others say doesnt matter. I ve been depressed for 2 years now and have missed out on too many opportunities with this disease which controlled my thinking,eating,and path in life. NO MORE… Just because this disease is a product of us, we are not prisoners of it. We can still make change in this world…… We may not be ablt to destroy it, but we can control the effects it plays on our day to day life……Dont let it dreep in your mind and dwell there because when it does, its a trap…Pray, and move on…We are a lot closer to our destiny than we may seem….
ok so im going to undergo the photodynamic therapy i will let everyone know what it will do altogether but from what i know so far from the operation is that it will drain out peoples lesions and cysts it really is helpful from what ive read mine is not severe anymore due to accutane i got it before it got bad which it did get to a really bad stage but i will let all you know how it goes. to howard i really suggest looking into it before the scalp removal
well heres a update after meeting with the surgical team they all feel that because of my severe case that they cant do it right know after getting my hope up again i new i shouldnt have thought it was going to end but what ever there putting me on embrel injections once a week with gabapetton witch hasnt done anything so far i looked into phototherypy if the embrel doesnt work see its so hard for all of us we all have drs who all have good ideas but there isnt a clear cut case that workes for everyone witch is hard some of us have good results with some stuff but not others. look forward to see im starting a website that just deals with disecting cellulitis of the scaulp and thats it with a blog and picture for use to track each other and share doctors and other treatments
I HATE to see that there are other people going thru what im going thru with this disease. Im a 30 yr old african american man and Ive been dealing with this since I was 27. i was 1st told i had a cyst on my scalp, which I promptly had removed. Only to have several nodules form around the scar tissue. After watching this happen, I sought another opinion and was told I had Acne Keloidalis Nuchae (which i was discharged from the military for). In May 2010 i had a huge deep portion of my scalp removed ONLY to have more areas form…I have NO social life and Im even embarassed to remove my hat around family. i pray to GOD there is some type of cure/treatment that will help with this. i dont even care about the hair loss i just want to be pain free
Hey there, My name is Aaron I am 19 years old. I have had DCS for just over two years now. I have always had trouble with acne on my face and shoulders but creams and pads really haven’t helped much. DCS has really put a damper on my dreams of joining the Marine Corps. I have taken Accutane and it helped, for awhile. I am willing to try anything to make this go away. It so painful and embarrasing which all of you probably know. I wont even leave my house with out a hat so that there is no chance someone will say “Hey whats wrong with your head?” or “Man your head is disgusting!”. I just want this to go away, and I guess it kinda helps to tell someone that knows what I am dealing with. If anyone has any medical suggestions you can email me at a_chapmanoohrah@yahoo.com any help would be greatly appreciated. Thanks, Aaron.
DR Lloyd King is at Vandi in TN and has researched this for years. He is my sons Dr. There is a foundation that Dr Vera Price has and the do a yearly meeting in Vegas. Dr King even goes to Washington to try and get more funding for this disease.
hey pamela do you know what surgerys kim is talking about with doctor Iltefat H. Hamzavi?
I am relieved to see that I am not the only one dealing with this. I am 24 and I have had this since I was 15. It seem to me that heat and covering make the inflammation worse. I will say that is it a lot better that it was a few year ago but still somewhat embarrassing.I was prescribed Bactrim which works wonders but unfortunately, I was allergic to it I never know what people see. Doxycycline, Minocycline and Tetracycline all seem to work short term. I have to by black pillowcases to mask the blood and puss in case I have any guests. I do have a social life but tend to wear hats when I have flair ups. Not always the best. I have a job interview on Tuesday and I’m debating on whether or not to cut my hair low where it is no seems to offer a balance between coverage and clean cut.
Also, as hard as it may be, keep your hands off of you head. Squeezing and picking does nothing but cause more pain and inflammation. Also, as crazy as this may sounds, do your best to eat healthy and drink a lot of water. Keep your system clean. Every little bit helps!
Al what medication are you taking now?what allergic reactions did you have to bactrim?
Mark,
Right now I am taking Minocycline 100 mG, 2x/day. It seems to be working alright. I actually haven’t been on this medication since 2007/2008 So my body hasn’t taking to it as well as it used to I had some nausea this time around. The bactrim put me out of commission. I had severe nausea, dizziness, vomiting, loss of appetite. red spots on my skin. I couldn’t move/sit up in bed without getting sick. That was back in ’07 and the Minocycline was prescribed in its stead.
Hi, just thought I’d update everyone on what i said 3 months ago. So I’ve been to the dermatologist again and just over 1 month ago I was prescribed rifampicin 300mg and clindamycin 300 mg. Both are really strong antibiotics and infact the rifampican is used to treat tuberculosis and leprosy. I take one of each twice a day. And I must say that it really seems to be working. I have really cleared up a lot in the past month. It’s not gone 100% but about 95%. The bald patches are still there but there is no cyst. My doctor was really surprised with the results as it worked quicker than expected. I’m no longer in pain or bleeding and I don’t need to wear a hat everywhere anymore. I did a bit of research into the treatment and apparently it’s the same treatment they use for hidradenitis suppurativa and apparently is becoming the most effective. The only draw back is that if you’re american it may be exspensive to buy and you may not be able to get it through your insurance (or so i’ve been told). I am fortunate enough to live in the uk where I get it through the nhs. But either way if you are looking for a solution and have tried loads of others, please ask your doctor to try this on you because it does seem to work.
The DC may come back with time but for the now I am so pleased to have a bit of rest bite from the constant pain and puss/bleeding.
Oh I almost forgot to mention that because it’s a strong drug it can be harmful to your liver and you will probably need to do a liver function tests once a month like you do with accutane. However if you are an otherwise healthy fairly young individual it probably wont harm you in any way. Also it turns you urine and in some cases tears red, but this is normal. And you are not supposed to eat cheese, skip jack tuna and red wine whilst on this medication.
here is a update for everyone as in the past ive have written that 90 percent of my scalp is covered in sinus nodules and i currenlyon morphine thre tims a 20 mg and ocxycodone three times a day so whe i say this isnt for everyone ive had enough and didnt look at this option lightly.
i am currently seeing the derm at brigham and woman hospital in boston massand we tried couple diffrent meds and have been through 8 years of this with diffrent doctors, i went to the plastic surgens at the hospital and saw dr sampson who is apart of the team who has replace 4 full face trans plants.
today i got approval and a date of july 21st for my surgery to remove my scalp and get skin graphs there going to take 90 percent of my ifected scarred skin off and let it scar over with skin graphs. i will be in the hospital for four days and be going back allot to get wound attions and then the other graphs when it is totally healed in about a year i if all goes well will have no bleeding and no constant pain from my scalp witch mean all my pain meds my antiinflamatories and steroids all the diffent meds with nasty side effect will be done i will look like a man who has been burned on my scalp but witch is the less of the two eveils to try to explain to a job or ppl your rare disorder or just say you where burned . i have not been able to work in two year do to this from the pain or no one wanting a man who bleeds all the time on strong meds i take it will give me my life back i write this cause i know there is others out there that feel the same as i do and want a chance for a “normal” life well this doctor is the best and this hospital is the best at what they do i only hope that if this works that more can get this but get it before you need all ur sclp removed good luck to everyone i will update after the surgery anyone wanting ot know more go to my blog or email me at executivechef26@yahoo.com
thank you all
howard
Hello all!! I must say, reading these blog posts has moved me with such compassion. I have been shedding tears at some of your stories along with praying to the Lord Jesus to heal you all from this terrible condition. My husband was diagnosed with folliculitis at the age of 13 and just this week, at the age of 26, was diagnosed more specifically with Dissecting Cellulitis. The progression was not as bad as some, so he was able to play sports and enjoy a social life. In college the condition progressed a little more and started to effect his self esteem. However, fortunately for him he has not been devastated by it. We were recently married, and although I was aware of his condition it did not effect my decision in dating him. He is a beautiful person inside and out. I just want to encourage the young men out there who are struggling with this condition, to not give up on life. God sees your physical and psychological suffering and He will bring the right woman into your life, who like Himself judges not by the outward appearance but by the heart :-) Please be encouraged!
My husband is currently using a prescribed shampoo, Ketaconazole, along with his daily regimen of washing his hair with antibacterial soap and tea tree oil shampoo. He takes a multi vitamin and generally adds garlic and goldenseal capsules. This regimen keeps the condition under control for the most part, but the lesions still secrete pus, particularly at night. He is going to try some of the natural remedies and see how it goes.
I continue to pray for my husband for supernatural healing. Jesus still heals today!! I’ve seen others healed of many conditions and diverse diseases, so I’m believing for his as well! I will be praying for you all and all sufferers of this condition.
Blessings to you all,
Sharon :-)
Ive just been diagnosed, have two bald 50 cent size spots on the back/crown of my head. My derm doesnt know what this is, and is just reading me the text book so to speak. Is there someone in California who knows and can treat this without just taking advise from a book?
my doc put me on doxycycline for 10 days with no improvement, now im on prednisone for about 12 days. Im still losing hair as the spots are slowly growing and they puss and bleed off and on throughout the day. So far its not too obvious but im thinking of laser removal before it gets bad. im 35 and could pull off a bald look, ive kept it 1/2 inch short for the past few years so why not. its too bad there isnt something faster to beat this stuff.
dear charles,
my boyfriend was diagnosed with this and was also on doxycycline. it didnt cure him but kept the inflammation down. we are out in california as well and are looking into either surgery or laser treatments. if you find any info could you please let me know? gionnella@yahoo.com. thanks charles.
gina
Charles and Gina,
It would benefit you to take the time to read through all the posts on this blog. There’s a lot of helpful info here. I read all of them for my husband and we have some new things to look into now. God bless!!
Sharon :-)
Over a week into my 12 day pred treatment along with a daily doxycycline and a topical of retin a. The two bald scar spots are there, but the hair loss appears to have stopped for now, and the scar spots are dry, no puss or open sore. MUCH easier to manage as just being a spot on the scalp for now rather than a leaking, sore spot with slowly gaining balding growing larger. Guess Ill see how long the progression of the disease is stopped after the 12 day steroid cycle is over. Its strange no one posts here anymore. I assume its either so depressing, no one wants to mention it anymore, or perhaps that many people are doing better and not concerned about their condition as much anymore. People should post their diagnosis, treatments and progressions, it would help those new to it.
Couldn’t agree with you more charles why have people stopped posting the more we update and post everything that’s going on as far as trial and errors well help all of us
predisone was finished yesterday and today the largest area on my scalp has some fluids again, ugh. Back to the dermo thursday. Dermo wants me to take accutane ,the liver damage side affect scares me, bald with puss filled scars AND you cant drink, geez. Still contemplating treatment options-
I made a post some weeks back be we reiterate some thing that have helped me. Im taking doxycycline and also have a topical corticosteroid called mometasone it helps keep the inflammation down. Also, as I said before. Diet makes a different, drink plenty of water and try to eat healthy. It keeps your system clean and helps medicines work better it work better. I also used 100% pure argen oil as a moisturizer. It’s somewhat expensive but whatever properties the oil contains seem to help my skin.
hello everyone
well i just got home from brigham and womans hospital today after my surgery on thursday . i am going back in four weeks for a 5 day stay for skin graphs. this was a last resort for me as i had over 0 percent of my scalp covered and leaking for three years the surgen dr sampson in plastics there at the hosptial who i mind you is doing face transplants also. told me that there would have been no way that the infections and the inflamation in my case would have ever gone down or away. as he had taslked about bfore surgery he was plannning on going 1/2 of a cm to 1cm thick thickness when he got in there he ended up take 1/2 in to a full inch of thickness of my scalp deapth off this was a scary thing to look at and its a shock to see but after 6 years i wok up for the first time this morning and didnt have any drainage or leeking on my pillow or the smell of the DCS witch we all know is very bad if you are like me and your done and have no wear to turn and you know the medication they want to give you is worse than the DCS look this up if you click on my name go to my blog there are pics of before the surgery and me right know after now this it may look really bad now but it in time will look like a burn victom i will keep posting pics good luck everyone hang in there howie
Hello everyone if you are new to this blog or have read it in thep past i have allot to tell you all just let me make this clear this is my opion and what is working for me will not be for everyone . i have had this for 6 years my case as seen in the pics at the bottom of my blog are very mcuh the worse you can get i was seen bye all sorts of drs and tried everything steroids embrel acctutain prednazone opening them up injections lasers nothing worked. i went to a dr at lahey clinic here in burlington mass dr moshella who is 90 years of and wrote the book on this disorder his asnwer scalp me like he did back in the 60s with naval men he cared for no surgen in lahey who would touch it well long story short i went to brigham and womans in boston mass saw a dr bye the name of dr sampson in the plasticcs department he is on the team of drs who does the face translant witch is all over the news world wide his answer to me lets take it off al of it a first i didnt think he was serous but when we got apporoval from the insurance
i had my date july 21st 2011 came and i had never had surgery before so i was very scared all i remeber was the white light in the OR them waking u p in recovery to my family after the dr came he told me everything went well he had to remove allot he cut out everything witch was a 1/2 in thickness in the front to a inch in the back but it was gone did it hurt yes i am a week out of surgery and there is so much to tell everyone about this i plan on doining this in stages to explain it the right way but now this like me if you wake up every day with pain leeking bleeding smell of it balding and mentally you cant take it any more there is now hope if your lost and need your life back email me call me i will get you to dr sampson i woke up the last two days no smell no bleeding no pain from the swelling and my skin is growning agan yes i make look like a burn victum but i wont be the smeelly bleedig weirdo they look at anymore please theres hope even with there isnt a big patch like mine the smaller ones will do the same but be easyer to heal and fix goodl uck howard shepard jr 105 freda lane lowell ma 603 566 5744 call if you want answers
Howie, I hope you are healing well, it must be a relief to rid yourself of this condition no matter the cost. My condition hasnt gotten to the extent of yours, but its growing and it makes me think of making hard decisions now rather than later. Currently, Im inflamed and leaking again, nothing seems to make much difference it seems to have a mind of its own. My eating habits are stellar, they have been for about 6 months, with no change. At least its growing slowly, and currently its just two 50 cent size circles. Things could be worse I guess, Ill keep on my dermatologist and keep trying things until like Howie, I cant take it anymore.
well went to a new dermo today, so I took his opinion with a bit more clout. Going to try the accutane. Interesting thing is he confirmed my follicular occlusion syndrome which “contains” dissecting cellulitis as well as a couple of other nasty “acne” type conditions. Seems as Ive suffered from a type of this sickness for a long time. So were going to see if some heavy doses of toxic vitamin A (accutane) can somehow shock my oil glands into trying to live normally instead of go crazy and get all blocked up and create these problems. Blood tests in the next day or two, then off to the races, Ill post back, unless I commit suicide or liver fails.
I am a five year sufferer of dissecting cellulitis of scalp.Visit my blog for the whole story at dissectingcellulitis.blogspot.com
Hello everyone. I’m James a black male 32 years old and had this condition for about two years. I’ve been taking Claravis and Cephalexin , they both seem to help after about two years of taking it. My question is does anyone remember how they first got it or what they was doing when they first noticed it? With me it started as simple hair loss and then then the hair grew back but then it seem as though my skull was caving in. I could literally stick my finger almost an inch into my skull. I also suffered from the drainage and then it swollen up like there was a mini balloon inside my scalp. My Dermatologist has been real helpful but I still feel that there is more that can be done. I want to know has anyone been able to regrow hair in the affected area? I’m starting to see little stubs of hair but that don’t grow as thick or as fast as the rest of my hair. I truly do feel for everyone who suffers from this and pray that God bless you all. If you would like someone to talk to about this please feel free to email me isaihho@yahoo.com and maybe we can help each other or help bring more awareness of this disease to the world to find a more affective cure.
Ive experienced some sparse regrowth in the last few weeks in the area that was very first balding. But at the same time, the disease is growing in another direction causing more balding and scarring as it moves along slowly. So IM not gaining ground, but losing it. The strangest thing is the mind of its own it seems to have, one week of healing followed by a week of bleeding and puss. Then a week of scabbing and inflammation, then two weeks of good times, then three of bad times, so on and so forth. You never know and it drives me nuts. IM only a couple of weeks into the accutane and doc says it will be month two that I will see improvements, guess were going to find out soon. I was growing my existing hair out to cover my two bald scarred spots, but recently I went back to my old short hair cut, simple #3 on the sides and back with a bit longer on top. My barber was cool about it and talked me into going back to short, he told me just to own those bald scarred spots. It was mixed feelings, somewhat depressing but liberating at the same time. I guess Ive finally accepted I have these scarred bald areas that arent going away, in fact they are growing. Life could be worse though, initially my derm thought I had cancer….lol. Also since I have this disease I cant control, it has pushed me into taking better care of myself, the things I can control. I eat the best I have in my entire life, Ive dropped about 75 lbs, and am in the best shape Ive been in due to working out, running, biking etc. I use my anger towards the uncontrollable disease to do the things I can control and excel at them. It seems to help me mentally. I figure if Ive got a burn victim scalp, then maybe my only hope to offset it is a hot body….lol…at least until I can afford one of those expensive toupees …. yea right, not me. lol. Best luck and Godspeed to all of you
the accutane isnt terrible. it causes drying of the lips and skin, along with some moodiness. A bit of a yo yo factor also as my mood and energy is up and down. My scalp is marginally better, Im about 6 weeks in to the accutane. My scalp is itching often, I wonder if its the drying affect of the accutane or the healing of the skin? The inflammation is down dramatically, but still bald and still scabbed slowing growing. I also have a small pea size area that came up a couple of months ago under my chin on my neck. It started as a deep acne type but never erupted. It only shows as a raised hard bald spot on my neck. It appears exactly as my scalp sores did when they first started, god forbid this stuff takes off on my face somehow? I asked my derm and he said lets just keep taking the accutane. I guess all bets are on accutane to change the game into my favor. Guess we will see….
This is Rita again, I have not posted in a long time. My daughter is now 18, and has had DC for over 4 years. She had 2 courses of Accutane, with a return of nodes on her head. She did not want to go on Accutane again, and the Derm PA did not want her to. She has been on all of the cycline drugs, plus Zithromax, to no benefit.
However, photodynamic therapy has suppressed this horrible condition. She may have a sentinal node pop up (usually during stressful times), but no other outbreaks. She gets this done every 6 months and is seems to be working.
PLEASE PLEASE PLEASE ask your dermatologist about this or laser therapy before having invasive surgery! My heart goes out to all the men who can’t cover the lesions with long hair, as my daughter did.
Dear Rita, a sentinal node is not Disectting Cellulite’s..way different categorys actually its more of a lymph node.. Disectting Cellulites is more of boggy pustules and folliculites i have had photodynamic done once it killed the bacteria went away for like two weeks came back the parisites or whatever it is,is too deep in the skin for that light and levulan to penetrate,even asked a family doctor about it said he doesnt believe in it maybe for minor skin condtions but not critical ones anyways glad its working for you god bless..
howard bro i got some respect for you to step up to that level,it really is something that just makes you wanna go to extremes hope you are doing really well..i do have a question though have you ever seen an infectious disease specialist?im considering it??
Joe
i did see one once and was told that its a derm case as it is underlying skin issues with the oil glands and the hair folical even when i was on embral witch is a rumitory arthritis drug it effect where short . see all these drugs only mask it or settle it down nothing cures it unless you went ot my extreeme if there was a drug that could kill it and stope it form coming back with out going on meds forever id rather see that what i did was needed 6 years of all diffrent drugs pain meds cutting my head my self with a knife to get relief today i am a new person i feel great energy sleep like a baby who cares it im totally bald or look like ive been burned when i show my first pic i took of my scalp the way it was and now there no way i regret doing it!!! on a side not if anyone is intrested in trying to bring this rare and horrible disorder to the spot lite email me im trying to make a non profit charity for ppl with this i have the support of the surgical team who helped me and the derm department and if you are like iwas angry lost all cofidence and cant imagine living email i can help
I am a 24 y/o white male with PCAS (perifoliculitis capitis abscenden et suffodiens). I have had this since the Ned of 2006 or the start of 2007. It started out as a large lesion that was drained and filled back within days. I am in the military and during that time I was constantly wearing helmets, berets, and headgear. I tried all the anti-biotics and steroid injections, 2 6 month rounds of accutane, and nothing has worked. It affects my quality of life severely. No on understands when I tell them how these lesions drain on their own, and stain your pillows. They underestimate the effect it puts on your life when you cannot go anywhere in public without people staring (it feels like that anyways) or people asking me if I have been blown up (especially while I am in my uniform). Often, I wish I would have been blown up, at least the solution to that problem is mostly known! I have been receiving radiation treatments, maybe 6-7 individual treatments over the course of the last 6 months. The pain has subsided, but I havent had a treatment for about a month now, and the pain and drainage is starting to reoccur. In about 2 weeks I am going to have tissue expanders implanted in my scalp and neck to try and expand the tissue and then when they get large enough, the plastic surgeon will remove the damaged scalp tissue and replace it with the expanded tissue. (just google: scalp tissue expansion, its really an awesome process) Only downside is: I’ll have 2 very large balloons on the top of my scalp and on my neck. I do not care. I am willing to go the route of using skin grafts, if it will relieve the pain and stop the constant draining and the staining of my pillows, couches , anywhere I lay my head. If this works, think how nice it will be to be able to lay on my back to sleep, instead of doing the balancing act on what hurts vs. what is comfortable.
It’s both reassuring and alarming to see all the other people who are suffering with this ailment. I do realize that this surgery may not take and I’ll be in the same position a year from now. I hate to think about that. This seems like it is my last option. I will not live my life in constant pain, or have large, draining lesions on my scalp. I hope we can get a cure for this!!
feel free to email me with comments or questions:
jwschwindt@yahoo.com
funny how they make medicines for allergys and erectile dysfunction and all these other none serious conditions out there they work so hard to find cures and treatments for that but what about our skin disorder do they not know that it affects us mentally in life like we can literally feel these things individually if i speak for everyone like come on doctors get off your ass and start doing more research your getting paid stop wasteing time and literally help your patients..cause im sure if it was them or there son or daughter or wife they would be going to extremes right or wrong? anyways and whats up with all these damn medicines having so many side effects??? dont release something that isnt near perfection..hope alot more doctors start getting serious about things this economy is bullshit and we shouldnt be wasteing our lifes living like this its too short..
my son, army medic,has DC and is going to have surgery done with tissue expanders to replace all the scarred tissue on his head. I will post daily once we have the surgery done. Nov 17,2011. He had acne as a young man but once he got to Iraq it just went out of control and he ended up with DC. It is pretty horrible and he has tried everything except laser. I really wanted him to try that but his docs say that this surgery will preserve his hair and they will cut away all the scarred tissue. I am keeping my fingers crossed. he is in such pain all the time and the drainage is unbelieveable. he is 24 and has been in the service for 6 years. I think he is ready to get out because they say he may not be able to deploy again and if he can’t, he doesn’t want to stay in. This is a disease that greatly decreases the quality of your life. As we go through the surgery with the tissue expanders I will keep you posted on the good the bad and the ugly.
Mom to a medic
actually i may start my own blog with pictures and if I do I will put a link on here so you can follow his progress.
It started for me when I was 14. I had this quarter-sized postule that formed on my head that I thought was just a rather large pimple since I still had acne at the time. It swelled up and pushed all of the hair out but eventually went away and the hair grew back. some time later it came back and I thought it was strange that it was in the exact same spot, and now others were forming so I was sent to a dermatologist and I was diagnosed with dissecting cellulitis when I was 15 years old back in 2002.
I owe a lot to my dermatologist. He had never personally encountered it before but he was very quick in diagnosing it and was very thorough in his treatment though it took various acne medications(since I also had acne along my forehead and chin) before we decided to try accutane of which I completed two courses, the first all but ridding me of my acne, and the second stopping new postules from forming and reducing the swelling. While I was on my courses he would inject a steroid into the postules to keep the swelling down and to hopefully save my hair follicles which worked for nearly all but the original postules. My only side effects while on accutane were severly dry lips and nose which both would crack and bleed but it was very well worth it overall.
My scarring ended up not being very bad at all and affect’s a 1×3 inch portion of my scalp which can only be seen from the back right side of my head. I am not very self-conscious of it now but I was in college, which lead to me covering up with hats which would only make everything flare up. I decided to forego hats when I made the connection and I have thankfully been free of it all since 2006.
Hey Taylor would you say your completely bother free of this condition what was your doctors names and i would like to email about your treatment regimen
Yes I would consider myself bother free. I still get the ocassional acne in the hair near my neck and temples, but it is just acne. While the DC was active, just touching one of the nodules or accidentally bumping it was incredibly painful, but it hasn’t been active for years so there is no pain, no blood/pus, and no balding.
Dr. Timothy G. Abrahamson was my dermatologist and the one I had been with throughout my entire experience. As for the regiment I will have to contact them and try to get more information. Since I was a teenager at the time I was very innattentive of everything I was taking before the accutane(actually the generic version Claravis). I took that twice a day for the entire course if I remembered to. Less than half the time I didn’t and took it once a day(which sounds terrible but then again I was a teenager). During the second course I made sure to take it twice a day but this time I was also using benzoyl peroxide in tandem, though I can not say for certain if the benzoyl did anything for me or not.
was the benzoyl peroxide a prescribed shampoo? well im glad your doing better im thinking about doing a second long course but low dose so i get minimal side effects hope it sends it into good remission
Well Im still taking accutane successfully. However, the hair has regrown to approx 3/8-1/2 inch, which is full grown for me. I wouldnt say it is as thick as it was but nearly unnoticeable in passing. I started accuatane in Aug, so its been going on 4 months. Ive went from 20 mg up to 60 mg daily. I realize some have seen a recurrence after quiting accutane and that maybe my case as well, but it sure is nice for this little break from the open sores, drainage and pain. I tried other drugs, mostly antibiotics and steroids with no changes whatsoever. The side affects are the same, moody, thirsty, dry skin severe, dry lips severe, sore feeling most of the time, swings in energy and mood severe, strange “sinus” headaches also. My derm says weight loss is helping, I have no idea why but he says that obesity is directly linked to the disease as is smoking? IM a past smoker. Who knows if they are right, we will see i guess. HOWIE!! YOU ARE THE MAN, CONGRATS ON YOUR CLEAN SCALP, YOUR COURAGE IS AMAZING!
Joe, no. The benzoyl peroxide(10%) was a gel I had to spread on my scalp twice a day. I can’t be certain it worked to any degree, but it did leave bleach spots on all of my non-white handtowels.
and how long was your course? do you remember by any chance? and the miligrams you were on
Taylor I am interested on your regimen That you were on,as well as your miligrams that joe suggested
my son has had his surgery to put in expanders and it was a very painful ordeal and he is beginning the expansion ordeal starting tuesday. He has had less drainage than ever before and the expanders are in place and we are waiting for a miracle.
pam click on my name and get my email address if you see my blog and the pics below it you will see what he has to look forward to if he wants to talk i can tell him what he has to look forward to cause ive lived it and now am very happy howie
They removed my previous posts, I suppose because I mentioned the company where my husband purchased the red reishi mushroom (ganoderma) products from. Well, either way you can do the research for yourself on Ganoderma or Reishi Mushroom. There’s tons of info out there, but I don’t think anyone has done any research on its effects on people with Dissecting Cellulitis. All I know is that it WORKED for my husband!! Take that with a grain of salt. When I first read these stories this summer, I literally cried because I felt the pain and humiliation you all were experiencing. I know what this condition was doing to my husband. I had been praying for a solution and as far as I’m concerned we found one. If anyone is interested in hearing how my husband is beating DCS email me at theroseofshaaron@yahoo.com. God bless you all!!
I’m Sharon’s husband and I have had this condition for about 14 years. Initially I was told that it was “folliculitis” and the things the doc gave me didn’t seem to have lasting effectiveness. I was given a horrible smelling prescription shampoo, topical steroids, and some cream. After the next visit I was given antibiotics. Antibiotics seemed to have the most effect but I hated taking them. I couldn’t eat milk products with it because calcium lessened the effect. I also couldn’t enjoy activities in the sun as much because it made me more sensitive to the sun. I think I saw two other dermatologists over the course of fourteen years and they all told me that I had some type of folliculitis and that if I didn’t get it under control, it would begin killing my hair follicles. I found my own ways to mitigate the effects of this disease. At one time I tried putting peroxide on it. But later I found that washing my hair with liquid antibacterial hand soap helped a lot. After that I found that washing my hair with Suave Humectant shampoo worked well also. Then I found that the Suave Bio Basics shampoo worked even better, but I believe Suave stopped making that shampoo for some reason. After that I found that the Ultra Strength Clearasil Gel worked well too. If I had any number of these products I would use them in conjunction with one another; I would wash with one, rinse, and then wash with another. After about 11 years of using these things to control this disease, I went to another dermatologist. This one prescribed me Nizoral 2% Ketaconazole shampoo. This was by far one of the best things I had tried next to antibiotics, which I hated taking. Ketaconazole shampoo still did not cure me so I also used it in conjunction with any of the other products I had. Still later I turned to herbal supplements, thinking that the best strategy was to hit it from the inside as well as the outside. There are some natural things that are known to have both antibacterial and antifungal qualities (as I have been told that this disease is likely a combination of both). Some products are garlic, honey, and goldenseal root. Fish oil also seemed to help with inflammation. I also found that Tea Tree Oil shampoo also helped. Now I am a Christian who believes that God heals people through faith in Jesus Christ so, of course, I have sought God for healing of this issue and have wondered why it didn’t manifest. I had even been in the presence of ministers who would pray for “someone with a skin condition” and it really sounded like God was talking about me but it didn’t manifest. I still believe and am still seeking God for my healing. It has only been within the past year that someone has actually diagnosed my condition as Dissecting Cellulitis. My condition has not been as extensive as that of many on this blog, but it has been a burden to me still. At certain times over the years I tried shaving my head to give more exposure to the scalp hoping that it would help to heal. Just like many other things I’d tried, it seemed to have some effectiveness but didn’t cure me. Plus I could only shave my head so many times before I got tired of it and let my hair grow back out. Recently I’ve seen some of the best results ever and was very hopeful of getting rid of this completely, though complete healing hasn’t manifested yet. There could be a number of factors for this. One thing is that, for the first time, I shaved my head in the winter. The fact that it has been cold kept sweat from carrying fungus and bacteria back into infected areas. After doing this l went to church the next Sunday and a church member gave a testimony of God miraculously healing his back. After he gave his testimony to encourage the rest of us to believe God for healing for whatever ailment we had, the church took communion. After taking the blessed bread and wine the pastor encouraged us to receive our healing from God by faith (by simply believing that He has given us healing). I did this. I believe He has healed me, I’m just waiting on the complete manifestation. Another thing that happened that effected the recent good results is that my wife discovered products with an herbal supplement called Ganoderma which comes from the Red Reishi Mushroom. Ganoderma is put into coffee, tea, and multivitamin products and has antifungal properties among other health benefits. Visit http://www.SereniGy.com/healingcafe if you want to try some of these products. Ultimately I credit God with my healing, whether it comes naturally or supernaturally through Jesus Christ, God receives the glory.
Hello, I am a 16 year old asian male. I play football, and around November of last year i started noticing a bump on the top of my head. I thought it was just a bump and it would go away soon, but it didnt. Around December I went to my family doctor, and he gave me some cream. That didnt do very much, so then I went to a dermatologist and he didnt know what it was, but he told me to take some kind of cycline thing for a couple of months. Then he gave me a diagnostic and told me it was dissecting cellulitis. By then, I had many postulates growing around my head. It is painful when i sleep, but then my doctor told me to try Accutane. Ive been on it for 6 months, and most of the stuff has gone away. Mentioned above by Sharon, about the reishi mushroom, I had tried some of it, and i don’t know if i was supposed to take it with Accutane so I stopped.I’m hoping to start using it again. I’ve only had this condition for a year, but the effects is painful physically and emotionally. I will keep eveyone with this condition in my prayers
God Bless
Accutane was horrible for me. It caused red dots all over my legs and then my legs got very weak. The red dots turned to scars. I got off it and got better but I still have some bad scacrs.It did look like it helped a little but I had to weigh my options as to be cripple or have bald spots. lol. Blue star oinment helps with the soreness in your head and Triamcinolon lotion can clear up some of the problem arears. I have a hard time staying consistent with the treatments. Black hairspray is a good cover up but make sure u wash it out daily, for leaving it in for to many days will irritate your scalp.
Drinking alot of water almost ten big glasses of water helps and apple cider vinegar also using the sauna feels great doesnt worsen for me then shower right away with a good shampoo i use tea tree
I have been dealing with this issue for about 12-13 years. Some days are better than other as I am sure you know. I have a very public job and it is quite embarrassing to have people stop you to say your head is bleeding or you have blood on your shirt.
I was really inflammed yesterday and have been for the past weeks and in my desperation I went to see my dermatologist in Durham NC. He was great! I am taking Solodyn and prednisone 8 day taper. Since yesterday the drainage has almost completely stopped and the inflammation and pain is completely gone. I cant stay on the prednisone forever but the relief is great. email if you want his name and number he is treating it very aggressively. mariogause@hotmail.com
Been taking Reishi Mushrooms and Tumeric by Natures Bounty three tumeric pills a day and four reishi a day go to local vitamin shoppe or Gnc they should carry them i feel like it helps a little bit i have noticed a difference not a major difference but it helps and we all know it feels good to have that relief
I really hope alot more is being done for us..hate antibiotics gonna do another round of accurane only thing that worked
Hi i have had disecting cellulitis since i was 19 i am 22 now.This condition has robbed me of alot of things in my life and i am afraid it may yet continue to do so.My dermatologist tried several anti-biotics but none of them seemed to work until he prescribed accutane which was effective i had no flare ups for up to a year after i finished my prescription.The flare ups however, have come back not so severe though, i went to see my derm who prescribed deocyclin seems ineffective so far.I will put my faith in God and i get healed from this horrible disease.Please people dont stop posting lets help each other fight this disease heads up..btw i wash my head with anti bacterial hand soap which aeems to be workiny currently
William did you go straight to accutane? I started with folliculitis i got cut by a barber took antibiotics for half a year them went straight for accutane and guess what it helped for like a year i did a five month course regular 40course mg but ive been reading that a full year long course could prevent it from relapse its worth one more shot i think antibiotics make me sick!!!!
One more thing has anyone gotten anything that they use currently to help keep the inflammation down? I used luxiq but stopped working
Hey mark, no bro i tried several anti-biotics but they seemed to either make it worse or not work at all.I guess accutane does do one hell of a job but the long term effects scare me e.g oestoperossis or damage to liver. The short term effects dint hit me at all.I have not used it for exactly one year and now the Dc is coming back i have several bean sized lumps on the back of my head. I guess i will inquire about laser treatment heads up everyone.
Oh so 1 year use may hinder relapse? Sounds interesting i guess thats a shot i may be willing to take aswell update us on how u are going and make sure u Re doing regular liver function checks bro!
Yeah type in disecttinf cellulitis treatment with isotretinion look through medscape i think look under treatment and medication it should be one of those its say it has the most success i wouldnt do the laser treatment just yet but aftr the accutane finally wore of i took minocycline 100 miligrams twice a day worked for a year take with food..luxiq and topical antibiotics clindamycin did alright there good options..but yes i am gonna take one more leap hopefully it magically suppresses tge disease its possible man and will keep our hair im gonna do a low dose you can ask for those like a 30 mili to not get bad side effects also sauna helps shampoo selsun blue tea tree i take that reishi and tumeric and coconut oil and Probiotics and im on Doxycycline it seems to be in check if you wanna email it bro id be glad to
Also drink like a gallon of water a day with liver detoxers
Jus looked through medscape very.interesting indeed so there are some people that have actual reported no relapse of dc mmm there is hope.my next appointment with derm is in march so ill have to wait till then and jus use the home remedies to control this.currently in on vitamins and fish oil, i wish have a go at the reishi mushrooms too.i am using anti bacterial hand soap to wash then i apply the antibac gel after, i have recently purchased clearsil and dermasil which some say is a scam, seems to be working so far. Funny how this disease holds us back i have to wear hats at all times and mayn sometimes girls ask y.i always have hat on lol i cant even go out often now…bt nways people keep on posting and lets work together and find a remedy
bro man ill tell you that i totally feel you on the hat thing it sucks when i was on accutane i felt so free never had any problem at all but yeah im guessing the long term will shrink the oil glands so tiny that maybe it might just go away im praying it would work that way who knows but.try reishi and tumeric and shampoo the best one ive used that works alright is selsun blue with salicylic acid,works the best out of all the shampoos ive tried but yeah man im gonna give it one more shot and then if all else fails gonna do the laser treatments probably:( but oh well antibiotics suck being on them forever!! no thanks good luck bro and let me know how things go as well
Hello everyone well it has been over 6 months since i have had my scalp removal do to the DCS and i can tell you that it has worked well i have no signs of any new growth and my skin is smooth and looking amazing waking up with clean pillows and to wear a hat an it not hurt is the best i feel normal again. if anyone wants to know what i went through just click on my name in orange and get my link to my blog and there is pics of the begining to the end and today how it looks to everyone still looking for a medical cure good luck its a long road and seems like the disorder is beeting the medical research my Dr sampson ant brigham and womans hospitl inboton ma who is a plastic surgen did a amazing job anyone wants advice just click on my name and get my email good luck and see you all soon howie
Well started accutane 8-15-11 my doc says i need 19k mg total dose for best shot at a cure. Im taking 80mg daily, have been for two months. I think I still have 2-3 more months if I can handle it. Side affects have gotten worse, sore, back pain, joint pain, dryness, itchy. It requires heavy maintenance with moisturizers etc etc. BUT absolutely no sign of DC. Hair regrowth in the damaged areas is also near normal with small signs of scarring. After 5 months of being on this, I forget what “normal” is. My daily routine is so different with treatments, lip applications, moisturizers etc as well as sunblock. Not to mention no social drinking, avoiding the sun etc. Add that to the joint pain, muscle pain, mental stress of the accutane itself and its alot to take in. But if it can keep the DC away, its a no brainer. We will see…..
Hi, Lawrence again. The last post I made was #91 in august about my rifadin and clindamycin treatment. Well the treatment worked wonders and put my DC into remission and it’s been 5 months since the end of my treatment and no relapse. However this happened the first time I went into remission after erythromycin treatment, so I’m not holding my breath as of yet. However I do feel positive, all of my hair has grown back, there is some scarring but nothing major. It’s good to be free of DC and not have to take medication either, however long it lasts. My dermatologist says they have absolutely no way of knowing if I will relapse again but I’ll stay positive. Also I’ve tried be a lot more healthier since august, eating well balanced diets fully of fruit, veg and low in unhealthy fats, I also drink a lot of green tea as it’s good for the liver. I don’t know if this will have any effect on the health of my skin and keep my DC in remission, but it wont hurt to stay healthy overall.
Again if anyone is looking for treatment to put DC into remission I strongly recommend the rifadin and clindamycin treatment as it has worked wonders and done what all the other anti biotics couldn’t. I was on 500mg of rifadin and clindimycin twice a day (1g of each per day), taken once in the morning before breakfast and once at night well after my last meal. Rifadin is a strong anti biotic used to treat tuberculosis, MRSA and all sorts of diseases so you will need a strong liver to cope and monthly liver function tests. But providing you are generally healthy you should be fine, I never had any issues. Please if you are at your witts end then ask your dermatologist/doctor to try this treatment and see how it goes.
Good luck,
Lawrence
Apologies, in my last post i said i posted in august when infact it was may #105 not #91. Also the dosage for rifadin that i was on was 300mg of each twice a day not 500mg. Sorry for the confusion.
Howie your the man.did you ever consider nd yag laser treatment? ?
Charles hang in there bud I am gonna do round two hope it works ima do a year long course you should cut down dose and do longer term just saying careful with your liver
lawrence long was your course? you mean rifampacin right? waht dosage of clindamycin did you take? and you have had no flare ups you say? and charles hang in there bud i think you might be on to something your doing a long course with high miligrams that sounds like it would work great i did my first course it worked wonders didnt come back as bad thank god!! but im gonna do another long course like nine months maybe more so your not the only one thats gonna do it man and you should consider taking calcium and msm its for joints all natural things and milk thistle or something to detox the liver stay on it bro
yes i did laser for about 6 months and because of the larger area and the depth of the infection it was working this was the only way there diffrent stages of this if its in the first three to four years and mild less than 40 percent of ur scalp some of the drugs work its all depends on the person in my case i tried everything and it ws 8 years and over 90 percent of my scalp everyone need to try everything to see if it works for them in the end when some one gets to the point i have this is the only way it will let you free of pain and mental issues and the feeling of trying to be normal again good luck ps inthe near future i am going to start a charity and site for adults like us so we can make this info we all have open to the world we are rare and other who have this need help and the info we know . a man i men at toys are us had his and didnt know i told him to reserch it and called me and thanksed me he had this for 25 years and never new just lived with it so i want ot help all those ppl thank again to everyone
I’m from Washington, DC. I’m 26, Black American and I’ve been dealing with this since I was 19. I honestly wanted to cry as I was reading you all’s stories. Everything you all shared is so true. I would curse no one with this condition.
For years doctors couldn’t tell me what was going on. Then I recently visited a doctor a year ago who provided some enlightenment. None of his prescriptions worked. Recently I was prescribed doxycycline for an unrelated infection and I started to notice some improvement for my DC.
Now I’m taking 200mg of doxycycline daily and I’m seeing great results. I made the mistake of interrupting my treatment and it returned worse than ever. I got some great information from reading everyone’s stories. I’m going to try to combine some of the other oral antibiotics mentioned with the doxycycline…and pray I can totally get rid of it within 6 months.
Correction, I’m taking 200mg of doxycycline twice a day. In total, I’m taking 400mg of doxycycline daily.
Honestly jeff I wouldn’t recommend adding more antibiotics maybe try the clindamycin and rifampicin treatment that’d some people have had good success with or long term accutane
Just finished two bottles one of numeric other reishi mushrooms seems like effectiveness wore off quick gonna see deem soon gonna do long term accutane:) hoping for the best!!
Hi Mark, yes it was rifampicin, I believe rifadin is the producers name. I was on 300mg of rifampicin and 300mg of clindamycin twice a day, for 5-6 months. I’ve had no flare ups so far, it’s only been 5 months though. It really has got rid of my DC, however it is too early to say I’m cured and it may come back so I wont count my chickens just yet. But even if it does come back one day the fact that I have some rest bite from the disease is fantastic. The lucky thing for me is that I live in the UK and we have the NHS which treats pretty much all ailments and will put you on such medication no matter what the cost and I don’t need to pay for the treatment. But having read on various DC forums from around the world, some people aren’t so lucky as they have go through health insurance to get treatment, which isn’t always successful or have to pay directly for the medication. I really feel for these people and wish I could somehow get the drugs for them, but obviously I can’t. There really should be more exposure to the media about DC as maybe there would be more non-profit organisations out there to both find a cure for this disease and help those that cannot get treatment.
Like I said the drugs I was on, especially the rifampicin, were strong antibiotics used to treat many severe ailments including tuberculosis and leprosy and I had to have my bloods taken every month I was on them to make sure it wasn’t damaging my liver. But I had no problems with it, apart from the fact i couldn’t eat cheese whilst on the medication. I think what these antibiotics have done which other weaker antibiotics failed to do is actually kill the resistant bacteria. With other drugs it only kills the weak bacteria and puts the strong stuff into remission where it will incubate and grow resistant to the antibiotic, meaning when you finish your course of antibiotics the disease will come back stronger. But with the rifampicin and clindamycin combination it seems to have actually killed both the strong and weak bactiria outright. However the only problem is that DC is not caused by bacteria or infection. Follicle infection is a secondary effect of DC, that’s why you get cysts full of puss. No one knows exactly what DC is caused by, but most likely it’s a blockage of the hair follicle, apocrine or sebaceous gland. And this is what worries me, because despite being rid of DC I still have a really oily scalp, and if this is the cause of my DC it may come back, so perhaps I might consult my dermatologist and ask to be put on accutane to stem the overactive oil production of my scalp and lower the chances of the disease reoccuring.
Either way for anyone that has not resolved their DC I strongly suggest trying this rifampicin and clindimycin combination.
Also I’ve heard a dapsone/antibiotic combination works really well for DC.
I got mine from a barber he cut me and it slowly spreaded took accutane once completely went away for one month then slowly came back but not as bad gonna try long term
But what caught my eye is you have had no flares for five months that’s impressive I can’t even go one week without taking minocycline or Doxycycline
Geez all these people.. Sad to say But I feel better Im not the only one with this horrible ………… I’m turning 27 feb 20th in less then a month and have had this problem since I was 22.. it all started out as a little sore bump whoch repeatadly went away fro months and came back and went away and came back… then 2 1/2 yrs ago it exploded.. I want to think it was a reaction from me living on my great grandmother’s couch after I had a car accident. my family needed me so I moved.. its all been down hill.
I’ve been on keflexin to start, then doxyciclyne.. with work fluctuating money problems someties i wasn’t able to try to heal it.. it went all over the back of my head and subsided with the doxycycline for awhile.. recently i got insurance again told my dermy to put me on something else so she gave me minocycline but now that i see it has helped so few i fear i may have to take the accutane..
I’m curious as to whether TA-65 would be of help to any of us in this situation..
HAS ANYONE TRIED TA-65?? the telomere rebuilding enzyme? from what iv’e researched i feel confident it may work..
I forgot to include..
I’ve found recurring advice to buy black opal acne cleanser.. it has strong antibacterial agents and pore cleaning.. best used with a shower cap to let the mixture take effect and not dry be brushed off before washed away.. I’m going to try this asap even if i can’t get the accutane for some reason…
Good Luck to you all,,
If we can’t work together to make society work hopefully we can help each other find away to stop this.
selective gene birth’s are needed. stem cell research.
!future without dissorder!
do your reading and alot of what we’ve mashed together and put in boxes have weakened are systems’ as the generation’s birth… stop changing fruit and vegitable’s composition to fit society,, let society fit into nature….. do your research…
I was thinking hypothesis…
*possibly having “buzzed” short hair.
-past beach going’s when we were all children, sun or suncreen or the combo of them both on the scalp? cell damage at an early age reacting with less human growth hormone being produced at that second to forth decade?
possible easy fix I’d like to know if anyone has tried this…
hgh and *oxygen bar (research it! ) and acne type topical’s like black opal..
i kinda pull shit out thin air all the time. anyone have any results?
I was thinking hypothesis…
*possibly having \”buzzed\” short hair.
-past beach going\’s when we were all children, sun or suncreen or the combo of them both on the scalp? cell damage at an early age reacting with less human growth hormone being produced at that second to forth decade?
possible easy fix I\’d like to know if anyone has tried this…
hgh and *oxygen bar (research it! ) and acne type topical\’s like black opal..
i kinda pull crap out thin air all the time. anyone have any results?
After reading the comments, I think I’m going to try a combination of the doxycycline with the clindamycin (oral).
The doxycycline by itself has provided me with excellent results but there is still some irritation/sores in my scalp. I’m hoping that the combining will completely free me of irritation/sores.
I will provide updates once I start the regimen.
Anyone have any suggestions for effective topical solutions?
I just remembered a topical solution that was very effective if anyone is interested. Try Temovate Cream (generic) EU 0.05% 30gm, clobetasol propionate. I was on this with a combination of oral antibiotics at one point and it completely cleared my scalp. The problem I had is that it’s a little expensive. Once I could no longer afford the topical solution, the symptoms returned even stronger than before.
But I’m going to try it again. Good luck everyone.
My results so far with the Temovate Cream (generic) EU 0.05% 30gm, clobetasol propionate have been very pleasing.
I apply twice a day and it’s almost completely cleared my scalp.
Right now I’m taking 300 mg of doxycycline twice a day as well. Soon I’m going to add 300 mg og clindamycin twice a day.
I will keep everyone posted on my results.
Awesome news I started using topical retina a before I start my accutane treatment in couple weeks and my nodules shrink fast as hell give it a try ask for the big pump size
Its actually micro retina A, give it a try…and remember ppl we are our best shot at helping each other and beating this not surfing the internet and looking for answers
I’ve now stopped applying the clobetasol propionate because it was causing my scalp to flake (not good considering I work in a corporate environment). I’ve gotten to a point where my scalp is completely cleared and I’m continuing to take the doxycycline (450 mg twice a day) and clindamycin (300 mg twice a day). So far, so good. Hopefully, I can stop this routine in September without symptoms returning. Sometimes I experience stomach discomfort if I do not eat when I take the medicine. Also, as someone mentioned, it’s good to get a healthy dosage of probiotics daily. It helps to keep you feeling normal. Try activia yogurt or acidophilus pearls (on amazon.com). Hope this helps. Will keep everyone posted.
Is that a safe amount of Doxycycline the doctor prescribed you that much?! I only have 200you twice a day …are you experimenting and found that much helps?! Cause I’ve done that you should try retina a works awesome…also if you have never tried minocycline try it works way better gave me two years of comfort! I would use 200 mg or sometimes 300 mg sometimes I tried not to abuse it
There will be a cure soon I know it there is people working on it as we speak
Mark,
I was mistaken when I typed 450mg. It’s 300MG twice a day for the doxy. Also,it wasn’t the clobetasol propionate that was causing my scalp to flake. It was the coconut oil I was using to moisturize my hair. At the moment, my scalp is completely clear.
And yes, my doctor and I kept experimenting until we found the most effective dosage. I’m going to continue the oral regimen. If symptoms should return, I’ll start applying the clobetasol propionate again. Like I’ve said before, I’m hoping to get rid of this by September.
well from what i read its not a bacteria infection so its very interesting why antibiotics handle and clear the problems sometimes it very tricky all i know is that accutane would be the best weapon in my point of view to destroy or make the oil glands so tiny that nodules wont happen maybe small ones but not nodules but thats good that your regimen is helping im gonna try accutane then if it doesnt work im gonna try the rifampicin and clindamycin treatment hopefully maybe it would work..ive done reasearch even doctors were like:0 i have studied this back and fourth and too my knowledge its a coin toss on what will work for people everyones body is different but everyone have faith also been reading that long term low dose of accutane is a possibility
My english is not so good, but this is my story…
My name is frank, i have now 4 years this condition. I have seen many docters, but nobody knows what this is. Now the last 2 years i have a good docter and it’s mutch bether now.
@JP
Is it completely gone? The scars are also gone?
**** HÄ° all If you drink UHT milk , try to stop drinking. ****
yes, it is completely gone. no more itching and no more pain. I’m still taking the pills. I stopped using the topical solution.
I’d recommend for the first month using the topical solution (Temovate Cream *generic* EU 0.05% 30gm, clobetasol propionate)and the combination of oral medicine (doxycycline *300 mg twice a day* and clindamycin *300 mg twice a day*) and for the second month just using the oral combination. Initially, I was going to keep this up until September, but I think two months might actually be sufficient. Well, it’s working for me. I hope others get similar or better results.
Disregard what I said before about probiotics. It caused me extreme stomach discomfort. Stay away from activia yogurt while on this medication. Just be sure to eat right before taking the medicine and drink a healthy dosage of water to avoid upset stomach.
Hope this helps! I wish I would have discovered this treatment back in 2004 when I was still in college.
Well Ive been on accutane for about 8 months. Worked my way up to 80mg a day, and the side affects are not to be taken lightly. But considering its keeping my scalp from bleeding, throbbing, and pussing all over, its not a bad exchange. Accutane dries your skin, to the point of needing to moisturize daily. Buy aquafor lip balm, it works and nothing else seems to. Also in the last few months, buy a good gel eye lubricant, I suffered a corneal ulcer due to dry eyes. As the accutane slows oil production, it does so everywhere, including your eyes. Ive tried unsuccessfully in the past, doxycycline, prednisone, retin-a, various other otc and prescribed creams. The only thing that worked was the accutane. It is a serious drug, but the side affects are bearable considering the option of the disease. Due to my recent eye problems my derm has cut my dose down to 60mg a day. I will be at my desired 17-19k mg total dose in about 2-4 months. At that point it will be approximately one year into the accutane journey, I hope it ends well with no long term side affects.
So how are you feeling man would you say its now totally gone? I really wanna do a long term treatment as well my doctor keeps shooting it down:/ was it all worth it?
If this was contagious there would be a cure by now. Because it is not, the medical community treats it like a novelty. The doctors we see in practice only dispense medicine, they don’t actually do research for cures. And those companies that do research for cures want to sell medicines which only suppress the symptoms. This is a tough spot to be in, I can only hope to that these conditions go away the same way it shows up, which is out of no where.
Dang true words!^ but I have a feeling it is.contagious not
Easy to catch though
Don your intellect seems high on this! You comprehend exactly how things work do you have an email id like to discuss more
Mark
Post your email and I will toss you a note.
Ryryg11@yahoo.com
Im on clindamycin and rifampicin right now and its amazing 300! Mg a day
Im a mixed race of white and black, I am 29 years old and I have had DC for 13 years, I dying know exactly what caused this to start, but I used to put Pomade hair dressing in my hair (when I had hair) and I remember rubbing it in real hard to get it to spread, cause it was so thick. I think I clogged my scalp with the pomade,, because less than a couple Weeks late I started getting the lumps and pustule I have tried everything for years and finally after going to numerous dermatologists and hearing “no cure”I just accepted that this is my life. I haven’t been outside of my house without a hat in 13 years. My pillow looks like evidence from a crime scene, I have 2 beautiful girls 5&6 years old and I pay to God this isn’t contagious. My 5 year old sometimes sees my pustules leaking and says Daddy your head is bleeding green. And the smell is so embarrassing, i’m more paranoid that someone will smell them than see them. I hate that i’m not the only one with this condition for your sake, but i’m glad i’m not for my sake, I’ve never met anyone else with DC. And I have read most these comments and testimonials and most of them are as if I wrote them myself. If anyone wants to give me advice or to ask questions, email me at buchanan1721@gmail.com.
P.S. Pomade was basically the same “Dapper Dan hair jelly” that George Clooneys character in O Brother where art thou put in his hair. Incase you didn’t know.
P.s. I doubt that this has anything to do with having DC, but i’m apparently a carrier of chicken I never had them and was exposed to them when I was a kid, my parents had me sleep in the same bed with my cousin when I was like 5 while he had them so I would catch them but I didn’t. Are any of you carriers of Chicken pox too?
First off I just want to say to everyone on here that I know exactly what you are going through. I know it’s TERRIBLE to say but I would be lying if I told you I wasen’t glad to hear people out there with this same condition.
I’m a 22 year old white male in the military. My condition started when I was about 19 years old. I was horseplaying with my younger cousins when I realized I was bleeding. The blood was more a milky, pus, oozy substance. It was this knot that had arubted on my head. At the time I thought nothing of it. Days later the knot was filled with pus again. I still payed it little attetntion. Weeks went by and the knot went away. However, another boil delevoped on the lower right portion of my scalp. It was intense. The pain was horrid. It felt like soft tissue with water underlying the skin. Then my father noticed i had a bald spot starting to appear.
From this point on it was all downhill. I read the symptoms and the suffering and I realte so well it’s scary. I can’t sleep at night cause the boils hurt so bad to lay my head on a pillow. I can’t get a haircut and when I do get a “trim” I have to explain what this disgusting condition is. My social life is affected by people saying I have scabies in the back of my head. The constant itching, pain and discomfort. When going to the gym and working out heavy it flushes excess blood into the boils which cause them to throb and ache. I’m sooooo tired of it. It is indeed VERY depressing.
As I’m typing this I currently have a silver dollar size bald spot on my lower right half of the scalp. I have three quarter sized hard boils waiting to pop and ooze that disgusting milky, watery, bloody subtance. The scarring from previous boils is ugly and looks like layers of dead skin.
As I’ve stated above I’ve been to several derms. I’ve had several biopsys and cultures done. All with negative results. Which concurs the statement that DC is NOT a bacterial infection. It’s simply a rare disease alledgly caused intially by folliculitis which then causes the inflmation and infection of the hair follicules that turn this into the condition known as dissecting celluitis.
I’ve used several different drugs including anti biodics and creams and lotions. ACCUTANE is the only thing that TRULY cleared it. I had steroid shots to commmence hair regrowth. I was clear and no longer bald. The only thing that could remind me of the condition is the scars that were hidded from my hair. However, as with alot of patients, I came off the accutane due to the side effects and the condition came back.
I have a month supply of accutane at 40gms a day. My derm recommened a 6 month treatment. With that being said I’m first going to give Doxycycline a shot at 300mgs twice daily for 15 days and see what happens.
I’ll keep you all posted and my prayers are with you all.
^^^ spelling is way off sorry not a grammer expert but I hope to of been helpful and got my statement across clearly to you all.
I knew working out made them swollen….that’s so weird..I’ve been on clindamycin and rifampicin its working for now im suppose to do another accutane course which seems like the only chance for a cure cause its oil glands that’s even though these antibiotics work great right now
hey mark what are some of your side effects om those two anitbiotics? Any sensitivity to the sun? See i work out in the sun everyday, i have a month supply of accutane, doxycyclin and clindamycin. However I’m sitting on these drugs for now bc idk if my skin can handle the photosensitivity. Im ab to go to the docter now to have them drain the three abcesses I have now and inject me with triamcinolone acetonide at 5 mg/mL which is an anti-inflamatory. Im going to continue to wash my scalp with anti-bacterial soap and eat healthy
For anyone out there questioning diet as an issue, trust me it does play a decent factor. There are many foods which act as anti-inflamatorys and then there are ofcourse sat fats which have high concentrated levels of oil which add to inflamation. Stick to low sugar fruits such as bananas, apples(great antioxidant) greatfruit(citric acid) and greens(brocolli, collards, salads) stay away from pork as its fat levels are extremely high and could irritate the abcesses and boils in your body and interact with any meds u may be taking.
I have no side effects at all….im lucky I guess….only medicine that gave me side effects was minocycline in the sun my skin itches but try clindamycin and rifampicin it works great!!!!! I have taken it for one month and I love it no cyst nothing…but sadly this doesn’t go away easily I gotta use the big guns accutane long term pray to god it works I read getting certain surgerys it still comes back sucks….also topical steroids wear off sooner or later for ppl who use it let me know if you have any more questions its like someone mentioned above doctors are making money suppressing symptoms temporarily. Not curing us
Well i’ve been on Doxycl Hyc 100 Mg twice daily and Prednisone 10Mg 3 times daily for 7 days, and I have used Benzefoam 9.5 % Benzoyl Peroxide, and my head feels great. Better than it has in 13 years. I have had no drainage in 3-4 days, no pain in 2 days its awesome. I still have 3 Weeks until this script is finished and I go back to the derm. Idk, if it will last forever, but at this point I don’t mind cause its relief. Everyone keep you’re heads up and one day it will all be over.
I had originally asked my doctor to prescribe me clindamycin and rifampin and he informed me that one of them, I don’t recall which, caused explosive diarrhea. Did anyone that took then have that side effect?
Clindamycin Is the one but that’s a possible side effects didn’t happen to me its “possible ” but every medicine has possible side effects
I am 34 year old Hispanic male and I have not been diagnose with DC yet but after reading the posts on this blog, looking at some pictures and wasting my time with dermatologists, surgeons and a Homeopathic doctor that have not been able to help or diagnose my condition. I have been experiencing this bold patches for the past year and half. It started with one on the left side of my head, felt like a pimple and I squeezed it but nothing will come out. After a while the bold spot came out and the skin got sensitive and was growing and filling with fluid, shortly after that another one came out closer to the first one. I went to a surgeon that drain them but his original thought was that I had a cyst but shortly after the surgery started he mentioned to me that I had something he was not aware and he was going to research more about it. Needless to say he didn’t say much on my follow up visit and just told me to keep the area clean and take some antibiotic for 10 days. Not to long after surgery the lesions never healed and I was bleeding every night. I went back home(puerto Rico) and got together with my dad, which is a surgeon and he felt that it wil be better to remove the affected areas, at this time I had two half dollar size and 2 small one on the left side of my head. That helped because after they healed I was not bleeding anymore, the only thing is that I wil have that permanent scar. Unfortunately shortly after the second surgery two new lesion came out on the crown of my scalp, I was told to see a dermatologist, he did say that he thought it was cellulitis gave me a cortisone shot to the infected area and put me on antibiotics for as long as need it. That didn’t work at all, shortly after that the swelling came back again. Another friend told me to go and see a Homeopatic doctor which he asked me about my life and made a homemade medicine that again have not helped but continue to use until yesterday because unfortunately the bigger lesions of the two I currently have drained that puss,bloody like fuid.
I am in the Houston, TX area and will like to know if someone knows a doctor that can help me with my situation, it will be great if atleast I can get a diagnostic, that way I can start working on possible solutions. Please contact me at jrr_1578@hotmail.com with any information that could help me.
Thank you all in advance and I will put all of you in my prayers.
Jose
Hi, Lawrence again. I posted last year talking about my struggle with DC and was the first to recommend rifampicin/clyndamycin combination. It has been about 10 months since i have stopped the course, for about 9 months I was clear however in the last month it has started to come back unfortunately. BUT, and this is a big BUT, it is no where near as bad. Instead of having massive cysts/pustules full of puss and blood they are merely small white heads and a few hard lumps. The lumps don’t seem to burst but they are very oily. Basically what I think has happened is the rifampicin/clyndamycin has killed the bacteria that was creating the cysts but the cause of the problem is still there i.e. oily skin. I have just been to my GP and he has put me back on the rifampicin/clyndamycin to get of it for the now and has reffered me to the dermatologist to get some accutane. So here’s hoping all goes well.
Honestly I’ve said it a few times on this forum, please, please anyone suffering from DC try the rifampicin/clyndamycin combination, it is a wonder drug. It totally clears your skin and although I have had a relapse it is nothing in comparison to what it was, no hair loss, no leaking cysts full of puss and blood, no excruciating pain, just a few spots that will easily clear in a couple of weeks.
Good luck people, take care!
I agree I only did a four week course clear now! Now I need accutane to manage it says derm
Man, I’ve had this condition for 4 years now, and I’m so flippin’ sorry I wasted my time while I had medicaid with doctors who didn’t know a damn thing about my condition. Now, I’m penniless, uninsured, and can’t afford a doctor visit for anything, but I think I’ve found a better solution to our problem than experimental and inconsistent drugs: a surgery that removes the skin of the scalp entirely and replaces it with either skin grafting or synthetic skin. Check these links out for more info:
https://dissectingcellulitisofthescalp.blogspot.com/search?updated-min=2011-01-01T00:00:00-08:00&updated-max=2012-01-01T00:00:00-08:00&max-results=3
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2696005/
I’m done with drugs. If I’m able to do anything about this condition, I’m getting this surgery done.
thank you chris for puting my link up here is the updated link with new picture from day one ot know hope everyone can enjoy and if it helps there is contact info on the doctor here in boston who did it howie
https://dissectingcellulitisofthescalp.blogspot.com/
Hey, Howard, what is the best way to get in contact with you? I emailed and called you using the information on your site, but neither of them seem to be active… I really do need to talk to you about this operation.
Maybe you did get my email already and are just gathering info for me. If so, I\’m sorry for rushing. I\’d really appreciate the help.
CHRIS
EMAIL IS EXECUTIVECHEF26@YAHOO.COM
CELL IS 9789351679
Hello everyone
So we are all struggling to find answers to what will help us all and after looking for years to find a charity to help everyone with doctors and help weather a dcotor or a surgen that might help so i started a blog but its not enough i am starting the DCS nonprofit charity to help us driven bye us and all the diffrent info we collected we are all diffrent and have had so many dcotors “experiment”on us so time to put it in one place where we can go to the doctors and say this is what we know and what is out there for us from the simple meds for the minor cases or like me take it off after 7 years and get my life back anyone intrested email me click on my name and will send you to my email or blog where my contact info is good luck everyone and i want ot thank dr pak and dr rassman who started this site to give us a place to meet and start to learn
Havent posted in awhile doing low dose accutane 10 mg its keeping it away if it comes back doctor is gonna put me back on antibiotics the clindamycin and rifampicin worked awesome but he wants to keep attacking it to trick it so it doesnt get used to treatment and stays away
Hey guys just a new medicince that is working for me. Clindamycin Phosphate Topical Solution USP, 1%. I’ve been on accutane 80mg/day for 60 days now and oral clindamycin for 2 weeks and all “cysts/boils” have mostly subcided and oozed out for the most part however when I shower I rub off the excess scabbing from the leakage/blood clotting througout the day and right after drying off I apply Clindamycin Phosphate Topical Solution USP, 1%.
Topical clindamycin comes in many different forms: foam, gel, lotion, toner-like solution, and pledgets (or pads). You’ll need a prescription from your doctor to get this medication.
Topical clindamycin works by killing the bacteria that cause acne. It also has anti-inflammatory effects. Usually, you’ll start seeing improvement of your skin within 4 to 6 weeks.
I noticed that If I apply directly after getting in the shower that the sores are still open and this allows the medicine to really penetrate deep into the pores attacking the disease from the outside in.
Again I have seen great results using this topical solution all over my scalp and would recommend it for anyone to atleast give it a try and record your progress.
Hey I just noticed this site and I’ve been wanting to explain my story for a while. I’m 23 white and for bout 3 years ive had dc, started and gradually worsened the odd thing is where I work I have s crew of only 10 guys one other male 23 has DC also ironic huh? He had it when I started and I didnt have the slightest sigh now 3 yrs later we both were diagnosed with it from diffrent derms and were both white that work together, also he says he didn’t get it until he worked there.I kno it’s not a coincidence I just dont kno who to inform with all my info cause I think I’m a unique situation and may can offer proof that other things can play factor. Please txt me cause I don’t have email 606 302 1790 if u have any information at all that could be useful for me or if u wanna ask me anything. Thanks alot and il keep on fighting as well.
If it is more common for black people I just can’t wrap my mind around 2 white people getting it out of 10. The odds would be astronomical plz give me useful info thanks
OMG! To find “real” people and “real” stories of what I’m experiencing is unreal. It helps to read everyone’s walk of life with this disease. I have tried everything (drug, treatment) that has been mentioned. I am a 48 yr. old female and I’ve had DC for 6 years and its gotten worse over the years. Either the medication has been too weak or too strong for me with severe side effects. My problem is, my body is VERY sensitive to medicine, therefore, it is hard to know what would have worked. So currently, I am faced with having radiation treatments to burn off the hair and follicols. I am being treated at the Johns Hopkins Derma clinic in Baltimore,Maryland. My doctor says the problem is your “hair”. Apparently, whatever this disease is, it doesn’t like “hair”, therefore, when the hair tries to grow, inflammation sets in and cause the hair follicol to curl under instead of coming through the scalp and that’s what causes the cysts to form and become painful. I have already lost 40% of my hair, so laser or radiation will just speed up the process. Of course, every drug or treatment has those “side effects”. I will keep everyone posted after my radiation treatments. Of course, I hate losing my hair, but I wont’ miss the pain. Hang in there!
Isnt radiation not recommend? Due to skin cancer
Hello Everyone,
I am a 28 year old male who has been dealing with this condition for 10 years. My doctor said there is no cure but suggested I take accutane for a long period of time, up to 2 years, and decrease the dose overtime. Theoretically, it may chock out the condition by keeping the skin consistently dry while decreasing the impact on the liver overtime. I’m not sure it is safe, but several doctors have recommended the same. Has anyone try this approach?
Mark, that’s a great question. I was told by my Dermatologist that the radiation will only affect the part of the body that is being radiated. However, I will definitely put that question on my list when I have my consultation with the Oncologist. Thanks!
I think there is some confusion here. The puss nodules are a result of the secondary baterial infection. This however is not the cause of DC, thus DC is not contagious, or something you caught. The cause of DC seems to be an autoimmune response to follicular blockage. This may be due to having very oily skin/over produciton of sebum.
To stop this disease you need to somehow stop the cause which is follicular blockage caused by sebum production. This may be tricky however the best course of action is antibiotics to clear the secondary infection and then prolonged accutane to stem oil production and prevent follicular blockage.
Its unknown why it happens all of a sudden…i got mine from a hair cut though
Patrice is the radiation gonna scar you? Id really like too know your doctor! And robert its very hard to believe a doctor would have you do a two year accutane regimen low dose would not get rid of it oil glands grow back easily a high dosagr maybe but that would be dangerous
straight up though lawrence you are on the right track!!! that pretty much sums it up but i disagree on one part because i know for a fact it came from a hair cut my barber cut my hair and cut me and said ooopps and i bled just a tiny bit and i thought hey it will just heal like any other cut and grow my hair back well that spot turned into a boil then eventually started turning into little folliculitis and then dissecting cellulitis which is too hard to deal with accutane is the only thing that gave me relief and clindamycin and rifampin….my theory is that it isnt immune disorder because i did not have this until after that cut which i shouldve sued her for because now i have a life long journey and medical bills but from what i have been reading it could go away just like it came back….this is some type of mutation like x-men literally it sounds crazy but i believe it is…i would love to discuss with doctors on this but they just say it will never get cured and too prepare for a lifelong journey until your bald i know there has to be more factors too this
Mark, yes there will be scarring. Probably alot. The doctors will probably offer me skin grafing or something like that, but that’s a major surgery process. Everyday I am researching this radiation process to learn more about it and its side effects. As I read, I noticed alot of articles state that this disease is merely found in males. This has me puzzled, because I’m all FEMALE…lol. But seriously, I afraid of the process and the long-term results. Contact the John Hopkins Hospital, Dermatology Department for assistance.
Robert, I was too afraid to try the accutane because of its severe side effects.
I’m praying for strength and courage to through this process.
Patrice have you tried rifampin and clindamycin? It will clear up the bacteria infection and honestly being scared of accutane is just scary cause they warn you! There are millions of people who took it and are happy it cleared my acne so well that my face is flawless. And helped my scalp dry for like two years i did a four month course…have you looked into nd yag laser? Long term low dose accutane less effects!? Your a female so a wig would be easy to pull off men cant really pull it off it looks obvious also they have topical accutane! No side effects you rub it on your scalp or tazorac it unplugs the pores that causes the sebum build up which is the factor
Mark, yes I have tried both rifampin (pill) and clindamycin. I had severe side effects, such as, mood swings (suidical thougths, migraines and irritation (sleepless nights). My doctor decided that accutane would not help me because of the severity. They had another patient (male) who tried the accutane and it did little to no results. I have looked into the laser. It is an option. I’m already wearing a wig because I’ve lost 40% of my hair. I have large holes in my scalp from removing the scabs from the discharge of the cysts. I can barely lay me head on my pillow. It is so painful. I have to wash my hair twice a week because of the smell and dry blood. I’m heading now to get another round of cortisone injections to relieve the pain. This is VERY painful.
Oh so it is pretty severe! One thing that helps me is fasting like eat no fast food or bread or tortilla no milk no cheese! Try pure water and fruits for a week see if any difference
Hello Everyone, it’s now 2:54am and I just read all 233 posts. I was diagnosed a little over a year ago, but my first episodes started in ’86. I was lucky that it would come and go twice a year. I’m 43 now and its decided to stay, and grow. I’ve put together a long list to research from your Posts and like all of you I feel we know more abbout DC than those writing our scripts…So thank you! I am a white male, born in CA grew up in IN and I live in AZ. I’m not sure how I got DC, but I do know I will beat it. Does anyone know if there’s specific research being done on DC? Is there a Specialist? Thanks again.
there is people looking for a cure as we speak.. there isnt a speacialist for this specific disease or whatever you want to call it but doctors do know its not easy to treat they say there is no cure and it just takes years of treatment and eventually ends badly.. bald and scarring! there is certain doctors that are working on finding cures for problems with the scalp that are considered autoimmune disorders
Mark, you said the same thing back in March..I’m just curious who these “people” are that are working on a cure that you keep bringing up. I haven’t found a single study being done on DC. Dissecting Cellulitis appears to adapt and over come every remedy…simple pattern of remission and reoccurance. It seems like every post says something worked for a period of time. The only thing that I’ve read/seen that worked was removal and a skin grafting and that was for the most extreme cases. I’m interested in the progression of this disease, it is a disease. I have dorment areas from past years (bald spots) and an active area the size of a silver dollar that is spreading. Time fram is what I’m looking for…how fast does this tunnel, spread? Anyone?
well john here is the link
https://www.carfintl.org/faq.html
Well, not to point out the obvious BUT its not exactly what I was hoping for, or as focused on DC as I would have liked to see. Please dont confuse a “Foundation” (that gives out 1k to 20k Grants) with an actual “Research Study”.
The best part:
“This is the first and only book on the diagnosis and treatment of cicatricial alopecia, written by leading experts in the field.” and it was written in 2010!
That’s not recent.
I hate to come off negative but it appears we’re the only one’s doing research on this.
I had this condition for two years now, I recently started taking accutane for a month and a half now and its working great, no more pain and suffering, but still got this huge big bald circle on the back of my head.
I have been wearing hats for the last two years and i am so sick of it, Hats are holding me back so much it is extremely depressing. especially for me as a law student, i am that guy who is always wearing a hat in class, I can’t do any law competitions like client interviews or trial advocacy because it would be just weird doing those with a hat on. I can’t apply for clerkships because i don’t wanna show up wearing hats.
I really don’t know what to do and how to deal with . hair transplant is not an option for me right now because i don’t have that kind of money for it. social life sucks balls
I am a very happy guy and really nothing can break me but this condition really messed me up, i can feel how you guys feel especially when you get that pain, its just exhausting dealing with this crap.
but yeah if you still haven’t tried accutane, you should definitely do it, the side effects of it in my opinion do not outweigh the suffering of this condition.
I am so glad i found this discussion, reading all the posts does help a bit.
Henry, i have this desease 4 years, but i take also accutane and its much better, but i still have it, but no more pain. I know it really sucks to have a hat on, i know what you feel because i’m also a young person, i’m 22. I’m also depressed :(
To everyone that is looking for more info on something that can give the wrost cases of what we deal with read my site also my charity site is in the works i will include that site as well
Howard https://dissectingcellulitisofthescalp.blogspot.com/
https://www.dissectingcellulitisofthescalp.org/
Hi everyone thanks for the support i also have dc i recently cut my hair i was growingg it becuase i didnt wanna see my head but i tend to squeez and itch at it more so i cut it and it looks horrible bumpy everywhere man please find a cure this sucks man ima try the cocanut oil see how it works
Thinking of going for the nd yag laser operation medicine is too expensive too be taking and harms your bodys natural immune system too fight infection ……..seems like antibiotic are always gonna be temporary only accutane seems like the only logical choice but even at that oil glands come back…removal of the follicular hair plug that keeps it from clogging and errupting ….wish there was a cure…topical retina works alright also high grade tea tree oil…..im taking zinc which helps skin and immune fight better im drinking tons of water still taking tumeric too it has anti inflammatory properties
hey
i’m 24 female from saudi arebia and i have DC for 5 years now
i need to know what to do with it .. any help pleas :(
Hey alghamdi have u tried accutane or topical retina works amazing for big nodules its 0.1 percent! Also ive used doxycycline and minocycline before accutane….i used 300mg clindamycin and 300mg rifampicin together worked really good how did it start if i may ask and what have u tried
Find a Doctor
Iltefat Hamzavi, M.D.
Iltefat Hamzavi
Dermatology
Contact Information
1-800-HENRYFORD
(1-800-436-7936)
Office Locations:
New Center One (Detroit)
3031 W. Grand Boulevard, Suite
Detroit, MI 48202
Map & Driving Directions
look for him, its not too expensive and he knows what to do, i tried every single thing, inyections, incisions, two surgeries (with other doctors), i found him on this blog, a year and a half ago, and since june of this year i have no more pain, no more nodules,just a small scar, but all of u know a scar is nothing compared to he pain and depressing that dc causes, if u have questions contact me at, shaggy_carlin@hotmail.com
Hello all. although I have had DSC since I was 17 (i am now 20) i was recently diagnosed with it last year. I am a college student studying in chemistry hoping to go into the medical field. The more I study this disease the more I feel like it has been more or so swept under the rug by researchers. I was planning on taking my future medical degree into the forensics field; but the more i look into this, the more I realize the world needs more researches for diseases like this. Unless one is diagnosed with this disease, I do not think the fear of this disease is comprehensible. As my friends knew I had a scalp problem around a year ago, I have been keeping it from them that it is back and more severe than ever. As my significant other noticed hair lose, I told her about the DCS coming back, she asked me if I would ever keep a serious disease from her. I was distraught that this was not considered a serious disease. I am a collegiate football player, which obviously means football is a huge part of my life. When my DCS flared up during season, I missed a couple practices, but nothing major. Now it is worse than ever, and I cringe to even put a hat on. As spring football is approaching, I do not even know how I am going to manage to put a helmet on. I am approaching my final years of football, a huge part of my life, and I am terrified DSC is going to keep me away from the game that has taught me everything. It is obvious to me that people who do not have this disease cannot understand how life changing this can be. I believe there should be more doctors researching a cure for this disease. I have many theories to the cause of this. I am going to use myself as a test to see if any of my ideas are the cause of this. It is a relief to see I am not the only one going through this and it feels great to finally speak out about it when no one else understands. God bless you all.
Hello everyone. I’d like to start off by saying I feel each and everyone of your pains. I have had DCS for about two years now. I am a 32yr old African American male.I got my first bump over 2yrs ago. I saw several doctors which had me convinced it was a cyst. It wasn’t painful, but me being use to the low fade clean haircuts, I decided to have it lanced. Well a couple months later, two more bumps came up. Went back to the doctor and was told it was left over cyst spreading and the only way to remove it was to cut a chunk out of my scalp. I had a 2 and a half inch chunk of my scalp surgically removed. Endured the awful pain for weeks only to have more bumps start appearing. And then the pain began. Long story short, I have been prescribed antibiotics, injections and many other medications. My condition is only getting worst. To make matters worst, this January our employer cancelled our health insurance. Its people like you all that gives me strength just knowing I’m not the only one in the world suffering and seeing how strong you are. I can’t even tell you what sleep is because its something I rarely see. I’m beyond depression. I don’t associate with my friends or family simply because I’m always hurting and not in the mood. To all the doctors, this is our call for help. Somebody, Anybody, please help us!!!!!
I know how painful the condition is. I generally average no more than twenty hours of sleep combined for an entire week due to the pain. I recently read a couple articles about a few kids who are suffering from the condition and I can only imagine. While there really is no cure at the current time, my mission is to start a community for people who suffer from the condition to share their stories and any other information that might be helpful to me or any other patient of this rare disease. My mission is also to gather as much support as possible in finding a cure for the condition. I know the specialist visits are expensive and some people just aren’t able to see a doctor. And PCAS is a condition that you definitely need to seek treatment early before it worsens. So I have been working with a couple more patients and we are trying to start a charity to help those with the condition who can’t afford to see a doctor or specialist. PCAS is painful and can and generally does cause depression. Not all people understand the disease and often “we†with the condition are made fun of due to the bumps on our heads. My final intent for this page is to show those out there (especially the kids) with the disease that there are people who understand their conditions and who support them. Please Visit my page at https://www.facebook.com/Pcascommunity
Have anybody tried this. They claim that they can cure this disease? Just saw this one and thought it could be of great help. https://www.eastsidechiroimagerejuv.com/Dissecting-Cellulitis.html
Shawn and t butler….i highly doubt any cure does exist if anything spontaneous remission is possible ……ive asked several doctors and there is no “fda approved cure” all my doctors ive seen which is like over 10 derms all say they can only manage it before it gets worse at an early stage BUT ive read alot on dr hamzavis hair laser treatment he actually seems like the real deal! Hair loss beats having it…right now im doing great taking accutane every other day as a maintenance therapy my doctors have said taking low dose every other day or even maybe just twice a week is good its keeping it in control well! I use retina a on the big nodules! I get dry lips and muscle aches sometimes headaches but its not severe like everyone portrays it….they are just warning patients to prevent being sued …..im on 20mg like twice or 3 times a week and its great
Hello everybody, I have had DC since 2006 after returning from Iraq. It started out with just a little bump and i was treated with some antibiotics and it went away for approx. 2 years. It came back with ferocity after i left the Marine Corps, after 2 years of not having a break out. Since it was contracted during my time in service, i was giving 60% disability for it. My V.A. dermatologist gave me Doxycycline and advised me to only take it once i start to feel a bump coming on, that method works. I went another 13 months without a breakout and then two weeks ago i began to feel one coming on, and so i took 3 100mg Doxys in the morning and 3 at bedtime and the bump never progressed and no hair loss or puss. I will keep you guys posted on any other treatments the U.S. Govt will try on me next, but so far i cant complain about the Doxy, only take it when you feel a bump coming on. Also use white dye-free pillow cases, i noticed whenever my breakouts occurred was when i was using dark pillow cases, just a lil advice. First and foremost keep prayer first and Jesus will find a solution!!!
HEY KRIS I HAVE HAD TWO BUMPS APPEAR NO PUSS …DR PRESCRIBED DOXY AS WELL…ABOUT TO BE 2 WEEKS ON IT …MY QUESTION TO YOU IS HOW LONG DID THE DOXY TAKE FOR YOUR NODULES TO GO DOWN …..THIS SERIOUSLY HAS BROUGHT ME DOWN AND I HATE TO BE IN PUBLIC WITHOUT A HAT NOW…
So I had one of the most severe conditions I have ever seen in nay pictures of DC. I had one lump the size of half of a softball! When I first started treatment I was given antibiotics daily and injections twice a week into the really inflamed areas. It helped alot with the pain and what i call (extra fluid) in the lumps, but didn’t really get rid of them, and I was weary about accutane. I asked to try the laser treatments and honestly one of the most PAINFUL things I’ve ever been through. They say its like a rubberband snapping, I say BS! it was like someone taking a blow torch to my head. I do have to say I believe i had the disease alot worse than most, i havent seen worse than what i had yet online. But finally my doc talked me into the accutane and i have to say it helped ALOT! It was the most effective. all the large lumps went away, all the infected areas were gone, (i did have scars left from the really bad areas). Ive been off the accutane for about 2 years now and im starting to get lumps again so im going to go back and be asked to be put back on it! It isnt that bad after the first week. And my side effects was i was a bit moody and had some off the wall dreams, also drys you out big time. Chapped lips and very dry skin. But i think those 3 side effects are fine. Ill take a crazy dream, rather than not sleeping due to the pain on my head because i cant get comfortable. Just my two cents and I’m happy to see others explaining what works for them.
Hey tony accutane does do wonders bud! Do a maintenance dose every other day like make a thirty day supply last you three months take like two or three pills a week saves you money on visits on medicine! My own doctors words! Also retina gel works great on huge bad nodules….also clindamycin and rifampicin 300 mg both at same time for ten weeks clearef up infection alot!!!! If it gets bad!!! Then jump back on accutane
Hello World. I have been suffering with dissecting cellulitis of the scalp for about 6 years now. the first 2years they thought it was ringworm. Im 19years old, do the math it started when i was 13. I am White(Caucassion) I Am from a scottish/hungarian family. I have tried every antibiotic, and injection. NONE WORKED FOR ME. Period. it would help then re inflame. A couple months ago i moved out to arizona, and they did not inflame from the heat. But my dad’s girlfriend is allergic to gluten so we cut wheat out of our diets, it reduced inflamation, and as soon as i ate wheat again, it flared up. So i am going to go on a no wheat, no dairy diet. i am regualarly using T-gel and Selson blue shampoos. Someone told me about an anti-inflamitory drink refered to as Nopolea im going to try this along with virgin coconut oil. So in short. No wheat, no dairy, t-gel/selson blue washes daily, virgin coconut oil applied nightly, and taking multi-vitamins. Im going to stay on this, while drinking plenty of water daily. And i will get back to all of you in6-8 months. I hate this disease and feel for all of you. it has ruined relationships and destroyed my self confidence. I stay postitive and am going to stay relentless towards trying to find a cure and or way to keep it under control.
I didn’t know other people had it.
So if anyone would like to talk, or has some suggestions feel free to email me. I would love to make some friends that share this disease so maybe if one of us finds a way to cure it, we can share it.
Love and Blessings to all.
Email me at jms71793@gmail.com Looking forward to hear from all of you (:
does anyone know if the dosage of doxycyclin is relative to body weight………im 6’2 and 250………..my dosage is 100mg twice a day and i keep seeing posts that talk about higher dosages………..i really feel like its not enough these 2 little pills i take….if anyone has any info please write back
Eduardo, the doxy for me takes a day to make the bumps go down. Like i said, i take three pills in the morning and three pills at night, not every day because the bacteria will start to become immune to doxy. Take the doxy only when the bumps appear and take for two weeks, at the dose i explained above. It helped me, but everyone is different. Also, i realized that fish oil is helping alot. Have not had a flare up since i been taking fish oil. Hope everything works out for ya!! My prayers will be with you all.
thank you kris…i been on doxy for 3 weeks and i have not had any new bumps but my cyst or nodules have not go away …i wonder sometimes if i have been miss diagnosed?….feel so helpless waiting for my second dermatologist appointment…..i was wondering if any of you had success with drainage…and if there nodules are anything like a scalp cycst ……thank you for your prayers kris and my prayers are with all of you …i have been only 3 months with this disease and im already experiencing depression. growing my hair out in an effort to try to cover my 2 half dollar size bald spots…been using a aloe vera gel on my cysts…dont know if it will do any good :(
@Eduardo I am on the same regime and I am 5’6″ 150 lol. So I assume it has nothing to do with weight. I am also on Minocycline though.
hey darren……..i hear minocycline and RIFAMPICIN ….are really good ……….i just got a corticosteroid injection on a nodule that was causing me the most pain…im hoping the swelling goes down soon …..my dr said that to give the doxycyline one more month..and if it doesnt help any then we are switching to rifampicin and minocycline……..darren ..i will pray for you brother.i will pray for all of you ……keep fighting :)
well…..good news everyone …i been on doxy for 2 months now …got some steroid injections …and my …bumps have grown hair and have gone down ….no new bumps to report..im crossing my fingers ……what ever your treatment is …i find that the less you worry about it the better it gets for you ..its hard i know …but stress can be a factor….also I tried to be a better person…to my friends and fianceee…do nice things for people and pray ..you will be suprise how much therapy that can be for you when your going through a tough time………..i hope god helps all of us …and i hope you learn to cope with this disease….its not the end of the world …you have legs..you have arms …your still here breathing baby..there are worst things in the world… stay positive you guys :)
Thanks Eduardo. I finished the month of minocycline and it didnt do anything. After that my derm prescribed me accutane and im on my second month. First month I did 40mg/day. Now I am on alternating 40mg and 80mg per day. My bumps have gone down but still there. My head does look a lot better maybe because my hair is longer so it is harder to see my bumps. After accutane I did noticed some hair growth in some areas that were bald as well so over its getting better. Still have those darn bumps though but I still have a long regime left. (6 months total) The derm also gave me kenalog (steroid) shots too everytime I went there but really I didnt notice anything from that either.
Hello fellow suffers…my name is Shrie I have been suffering with this condition for several years now.I have become very frustrated with it all together.I need relief!!! Anyway im at my wits end with this eilment so I am taking action.Somebody has to do something.Im so tired of being in pain…the nodules have begun to come on my neck,my lymph nodes are being affected wich is causing me severe neck pain.Its just about unbearable.With all that said I have been reading every ones comments,i have beun my own research of the medicines where taking.I think I have good news for us all its a repeat of Shawns post. I have spoke with the people at East side Chiropratic & injury Treatment center (Debbie) to be exact.Im excited about the info she gave me so im going to give it a try.She said they use microcurrent therapy and Tea Tree based all natural shampoo by Paul Mitchell. Debbie says it is amazing and has amazing results.So im going to give it a try if it works for me all my fellow suffers will be the first to know. At this point yes im willing to try anything,this is the most God awful condition to have being an African American woman and all I cant do anything with my hair(espically not perm)its really embarrassing.Some days Yall I literally want to pull my hair out I think it would feel better than the pain and suffering.And is this affecting anyone in the neck ?
Tetracycline has worked wonders for me. Few weeks after taking meds pain and swelling and bleeding stopped. Few more weeks later hair started to grow back. Only thing my dr warned me about is trying to stay out of sunlight when on these antibiotics I’m a land surveyor so most of my time is spent outdoors but it really didn’t affect me. Feels really good not wearing caps all the time. Oh one other thing I’ve been taking these meds for bout four months now and according to my dr probably gonna have to take for a long time. Beats having surgery and u couldn’t tell I had this problem. Trust me I know what u guys are dealing with. Hope this helps
Hi Everyone, I was diagnosed with DC today, although I have been dealing with the condition for about 7 years. Like many of you it started out as a cyst, I had surgery to remove it and then that’s when the fun started. Mine has been confined to the back of my head and is very painful and uncomfortable.
The dermatologist i saw today said it’s hereditary and I was probably born with the disease. He’s recommending accutane but told me to think about it a bit.
For now we are going with a prednisone doxycycline combo, which has worked well in the past but it’s only temporary the symptoms subside until you stop taking the medication.
I’m leaning towards the accutane, because I feel like i’ve tried everything else. Luckily I have a great barber who knows how to cut my hair without irrating it too much, but I do have periods where I have to go weeks without a cut due to the pain.
Also clobex steroid shampoo helps to sooth the pain and itching but again it only works temporarily. I hope this helps, and I hope they find something to successfully treat this.
I will let you all know how my treatment goes.
Hello everyone…ive had one of my cyst or boils flatten out completely and all the hair grew back….yet im sad to report the quarter sized bump on the top of my head was operated on last week…….I feel like dermatologist are completely clueless when it comes to this disease…..the dr said it might be a pilar cyst …so they decided to cut it open and see if they can find the core………..no core !!!!!!!!!!!!! just bleed and it flattened out some ….then they proceeded to cut a piece of my scalp out …said my skin was loose there and it would never heal right …..im laying there in horror , crossing my fingers praying this is the right move…heart dropped when she couldnt find a core since i am very familiar with those pilar cyst removal videos….so they sowed me back up and the stitches come off tomorrow …now i will have a scar there and it appears that the swelling is slowly returning to its original state…im so bumbed out i feel violated and butchered…i asked the dr why wasnt there a core in my cyst …she said might be that the infection cleared up and my skin was just stretched out ………..ANYONE EVER HAD ONE OF THESE CYSTS CUT INTO …IF SO WHAT CAME OUT ….MINE ONLY BLEED
hanif sowell can you describe to me how your healing was in the cyst that got removed and what came out of it …..my dr was clueless as to what was in mine …no puss just blood
Taking accutane currently best thing for it! 30mg 3 times a week one pill a day ask for topical retina also strongest strength!! Or this one treatment that cleared it for awhile a ten week course of clindamycin 300mg and rifampicin 300 mg both at same time worked great and cleared it for two months felt amazing! Supposedly it has even CURED people! Mine is well taken care of thanks too accutane trust me it was bad now its gone and doctor wants me on it for a whileeee…..side effects arnt bad! Just dont drink alcohol!!!!! Its worth it low dose wont harm you people that take 60 or 80 thats ridiculous
well guys the surgery on the stubborn nodule was pointless..stitches came off today its just as big as it was before and now i have a wound that for sure will leave a scar. I literally had to force my dr.s to put me on rimpafin and clindamycin……..now i wait to see if this cyst can finally go down and go away ……before the surgery it had hair and i was learning to cope with it …even started getting my hair cut ….now im back to feeling how i did when i first contracted this mysterious disease..
Eduardo that treatment works awesome! But if its not bacterial. It probably wont cure it …bacteria is a secondary event you gotta surpress the oil/blood/pus….when that forms bacteria happens thus antibiotics are used but it will come back doctors dont know why the infection is caused hereditary is bullshit they also say its a african american disease wtf!white people and hispanics get this….its the hair follicle that cause infection and being on antibiotics for a long is bad!!! For your stomache and immune system i was on minocycline for two years it will wear off! Attacking the oil glands with accutane is best bet
I also heard removing hair with nd yaglaser CURES IT! But you will be bald!
mark ..thanks for your input man…i really appreciate anyones help on here this is like the only helpful page i have ever come across …its my second day on rimpacin and clindamycin…..have you or anyone here experienced the side effects of climadycin?…they told me to discontinue use if i had diarrhea …has anyone experience diarrhea on clindamycin???????????im worried i want to keep trying this new antibiotic but 2 days in im not sure i want blood in my stool and 10 -15 trips to the bathroom???????????
Eduardo I feel your pain….I have had several of my cysts cut…well I stopped letting the Doctors cut me because it was pointless. Pus and blood came out of mine never a core and yes they would immediately come back. I have heard about Accutane but im not sure if I want to take that route. One of the other bloggers spoke of East side chiropractic and injury treatment center Google it. They specialize in this they were very informative and helpful. The lady I spoke with actually told me when I go back to the Dr. to have them call her and she will tell them what to do, so i’m really excited. The treatment they use is called microcurrent therapy Google that too . I would rather skip the Accutane and go straight to this but I have to see what the Dr. will say about it. Like yourself I feel like these Doctors don’t know a thing about this disease I feel I have done more research than any of my Doctors have. So good luck to you I hope it all works out IF I have any progress I will let every one know. Good day people ,good day.
Eduardo the first time i took clin it gave me problems so i waited a year or so tried it again worked well i took it after a BIG MEAL also try taking them separate one at breakfast other at lunch ….it worked good go buy some probiotics take them after your treatment to replace good bacteria….if you wanna email me about it shoot me your email ill be glad to discuss all my trial and errors what worked best and what didnt
slim….i will research microcurrent therapy thanks ….i wont ever let them cut me again…….mark ..i bought some probiotics and my stools are soft but its not diarrhea …so im hoping i stay regular…..i feel like my condition is not as bad as others i wish i could post pictures on here ..one of my cyst flattened out on its own and grew hair all around it ….but the one on the top back of my head is the stubborn one….it had grown hair and i was hopefull…at least there was hair…i think one of the main reasons this disease is so horrible is the way it makes us feel about our appearance hair is important to us and quite frankly seeing bald spots on my head makes me sick to my stomach…..im praying i have the similar results that gary bryant had ..for our bumps or cyst look very similar ….well guys ..im glad at least ive met some people that understand….i have a wedding to go to on the 29th ..im a grooms men ……dreading it so bad . lol…i guess it could be worst….
I have read almost all the posts and hate that everyone is struggling. I do not know if any of my suggestions will help but I am going to try the following with my 14 yr old son. Tumeric pills and coconut oil help with boils and echinicea with goldenseal. He will begin washing his hair daily with natural shampoo that has urea in it and applying 50-50 ACV/water. The derm dr. is talking about surgically removing the cysts and I do not want that.
Hi Slim,
Did you try the micro current treatment, if so how were the results?
If anyone hasn’t heard of it, here is the link …
https://www.eastsidechiroimagerejuv.com/Dissecting-Cellulitis.html
If anyone has tried it or goin to, please share!!!
Did someone tried a hair transplant?
Hey everyone, I’ve been dealing with this for 9 years now. I’ve been on and off doxy for 2 years. For me it works, reduces cysts and grows back hair, takes about 3 months. I stop taking it and don’t see/feel any new bumps until i stress out. I proved to myself that if I eat right and sleep at least 8 hours a day I can keep off the pills, though it’s hard to do living in NY. Like Eduardo, I decided to take a 2 side attack, think of it in a positive manner and maybe try accutane.
In the end this could be just your body protecting itself from stress, not sleeping well, not eating well and not excersising. With alot of sex, alot of sleep, vegetables and gym 3 x a wk, I not only control the pain and bumps but live a much better life. It’s easy to forget to take care of your self as “sacrifice” for success (work, career etc.) but we need to take care of ourselves first and everything else will come. Again I truely believe this is our bodies telling us to stop stressing! Good luck everyone, know you’re not alone.
I’m curious, even though it’s dissecting cellulitis of the scalp, has anyone else experienced along the face? For me, I’ve been getting bulges probably filled with pus or about to, along the outer edges of my face. It’s around the outside edge of the cheek, slightly under the mouth, and also previous cases right where the temples are. I’m just wondering if anyone else has experienced these things, and if it’s even the same condition.
Not sure if it\’s the same condition though I remember when I was 19 that\’s how I started. The first one was on my jawline and then another on my hairline. The hairline one I had to cirgicaly drain it. After that I started having blank spots on my head and then the cysts on the scalp.
The jawline eventually went away but it was their for a while. Doxy helped with those. 8 hrs of sleep did too.
Hello everyone. I’m typing this very exhausted so I apologize in advance for lack of grammar and/or spelling. I’ve been struggling with this condition for a few years now. I’m so inspired to research not only to help myself but all of you as well. JOSE brings a great example to the table. I’ve managed mine through 2 months on 2 months off of clindamycin as well as for the accutane. This was when my cysts and inflamed nodules were at their worst. After I had them reduced in size and the were all diminishing, I would prevent relapses through die, exercise, and adamant rest.You need alot of anti oxidants to fights off free radicals as well as food rich in anti inflammatory properties. These are any type of greens, ginger, aloe vera juice, coconut water/milk, chia seeds, many others. In the mornings, I mix a smoothie consisting of, 1 cup kale, 1/2 cup cucumbers, 1/2 cup baby spinach, half avocado, 3 tbsp chia seeds, 1 cup blueberries, 2 scoops organic PB, 1 scoop vanilla whey, 4oz coconut milk, 4 oz aloe vera, 4 oz coconut water. This comes out to about 2 glasses, drink it all!! I do this every morning, along with several other vitamins and minerals I take separate throughout the day and I have mine under very good control. Its also crucial no matter what your weight may be to consume AT LEAST a gallon of water a day at the minimum and to sweat for 45 mins steady at least 4 times per week. If anyone is interested i’ll go into more details about my diet, vitamins and exercise.
Thanks Cody, I’ll try the smoothie. Question, are you keeping it under control with or without taking the antibiotics?
Hi. I’m a 13 year old black/ white (mixed) girl. I develop this about a year ago but it just started to get worse 6 months ago and started to hurt 3 months ago. The pain is so bad that I can’t sleep at night. A lot of my hair has fallen out. I went to the doctor who prescribed antibiotics and a oil. They did not help. So I went in and had about 8-10 injections done on my head but they did not help. I now go to a doctor name Dr. Charles Crutchfield (look him up, he has own awards, graduated from the Mayo Clinic. He prescribed me an antibiotics to get rid of the bacteria part. I have to say my head has improved a little as I can sleep better. I went back and he said now that we have the bacteria he said we had to get rid of the fungus part, so I got prescribed another pill. I can’t tell if it is working yet. I pray it do. I hate the pain. I can’t do my hair so I go out to school with my hair a mess. I will post to tell if the medicine worked. Please email me at : jasmyn.nash4@gmail.com Thank you
I have had dissecting cellulitis of the scalp for over 20 years now. I recently tried micro current technology and have gotten decent results. So far I have had 13 sessions. I am not healed, but at least I can put my head on the pillow without any pain. Micro Current is not cheap. It is about $80 per session. I have had some of the hair grow back already and my scalp is much healthier than it was before. Although, I do get new cyst every now and then. I am going to continue with the micro current technology for a few more sessions. If you live in the West Los Angeles area, I can recommend you to the lady that is treating my scalp. Just note that not all micro current machines are alike. The machine that I tracked down is from comment number 278 above. Eastside Chiropractic uses Beautiful Image model 900. So I found someone in my area who uses the same machine. I also started using colloidal silver gel 24 PPM from the following website: https://www.lifesilver.com/ another product that I find to help is B&C Skin Tight Product for Razor Bumps & Ingrown Hairs-Extra Strength(12 oz) which you can purchase from Amazon. This product tightens the scalp and it is usually used for ingrown hairs. Make sure you use gloves when you apply to your scalp as it will dry the hell out of your finger tips. I will post again once I have more information. My heart goes out to each and every person who has this condition. I wish all of us good health and may we all be free of this disease soon. Hang in there and never lose hope.
My teenage girl was diagnosed with fulminant dissecting cellulitis. What shampoo, conditioner, lotions, lip balm do you use that can be brought in stores? She was put on Doxycycline and a topical solution for her scalp. She will be getting injections at her next appointment. Trying to find out best products to use at home and to find best medicines to use and minimize hair loss. Trying to find out about hair growth and what to do. Wearing her hair up at times really hurts.
Hey guys this is my first time writing on the page. I contracted this disease while in Iraq back in 2007. Long story short I went through well over 30 surgeries to include incisions and drainage. I went through two misdiagnoses and multiple antibiotics. I also went through steroid injections and self injections of humira. NOTHING worked. I finally 18 months ago started getting Remicade infusions every 8 weeks. My head has cleared up consistently. I have to stay on the infusions which does have a lot of risks however it has been a blessing from God in the aspect of what it has done for my condition. I had a very SEVERE case and although I will most likely be on infusions until my mid 50’s according to my DR. an Army Colonel who has about 12 soldiers on her case load with this disease. I have been blessed with it staying down. Close to 8 weeks I will start to have a nodule or two that will start to form but as soon as I have the infusion they will drain at night and be good again. Another thing that one of my Drs. told me was not to take in any dairy. I have found that any uncooked UHT is a catalyst. Also alcohol will immediately irritate the condition as well. NO beer and NO liquor. I cut my hair every week and keep my scalp clean. This forum has been a comfort to me and I wish you all the best. I will check in from time to time if anyone has any questions.
I have had this condition for almost 3 years now. It started as one solitary bump in the top of my head. after being misdiagnosed it spread over the next few months. What I ended up doing was taking the antibiotics the dermatologist gave me, and after that didn’t work, I started putting proactive on them, while still taking the antibiotics to be safe. the proactive helps them get to the draining process a little quicker, but it’s still painful. I’ve read several places that after this occurs, you have permanent hairloss, and although I am not a doctor, I think that people automatically assume the follicles are damaged once this condition occurs. they aren’t. My condition is not gone, however it has shifted. Specific places where the condition started no longer have inflammation ( like the first bump I got, which was huge) there are very tiny bumps here and there, but the hair has grown both around some areas and in others. Also, when you first see/feel a new bump coming in, pop it immediately. When I noticed 2 bumps forming near the front of my head (while hair was covering them) I had a kneejerk reaction and popped them immediately, and the hair has stayed, even with the tiny bump that is left.
I guess what I’m trying to say is we may be closer to a cure than we know. Also, for those of you who want to go without a hat or feel normal, let your hair grow out for a bit, and get a free sample of “Caboki”. It isn’t noticeable at all, it looks like hair, and I know when I use it, it’s just a relief to not have people staring at me for my condition.
I’m trying to get to a point where all of the bumps go down in size and hair commences to growing in all if not most areas, and using Caboki to fill the gaps.
Doe’s anyone know if this is related to smoking or would smoking make it worse someone let !e kno
Hey Guys, I’ve been noticing that breathing correctly and keeping good air quality helps keeping the lumps under control.
Question: Are most of you sleeping less than 7 hours or sleep on your stomach? I’m getting the strong feeling that this condition is affected by the amount of oxygen we get daily.
PS: Sorry Xavier I don’t smoke. Though I haven’t heard that it does, maybe try stopping for a week or two see how it affects it. I’m curious to know what you find out.
i have heard that smoking exacerbates the condition. first hand i feel like it made mine worse! right now im still currently on accutane doing a super long regimen my doctor says its safer and better than taking long term antibiotics which i already kinda went thru that when i took doxycycline and minocycline for about two to three years. my hair is kinda growing long so i cant really apply the retina gel anymore but im letting hair get a little long because the inflammation is totally under control. im doing 1 pill a day of 30 mg 3 times a week its a maintenance regimen. i also use the sauna alot and before i do that i apply tea tree on my scalp hoping alot of it soaks into my pores and cleans out the underlying bacteria. drinking lots of water is very crucial i take vitamins and tried all those natural antibiotics but they didnt really seem to do much i did try to cut out fried foods completely out of my diet. for those really suffering i highly recommend low dose accutane only side effects i hate is i get kinda lethargic and the dry lips but ill take it if its mean beating this and the topical retina 0.01 percent there both pricey medications but well worth it!!!
Hey guys so I have diagnosed with Dissecting cellulitis 2 years ago. I was on doxycycline for one year, but my dermatologist said it was harmful to take antiobiotics for prolonged periods of time. This is because the body becomes immune to it, and might have detrimental effects in the future. My derm recommended me accutane, and I was terrified after reading all the serious side effects. However, I would do anything to get this disease out of my life.
I ended up trying accutane and I am on my second month. Trust me when I say this: ACCUTANE does wonders. I sincerely with the bottom of my heart suggest you guys take this. I have not expereinced any sideffects besides dry lips. No depression, no fatigue, no muscle aches, none of that!
Harry glad to hear the accutane is working for you. What kinda regimen are you on?
Mark I have been taking 40mg every day and am currently on my fourth month! I have no bumps on my scalp anymore, and the scarring is also diminishing greatly. Hair re-growth is occurring which is a positive. I will keep this regimen for about 4 more months, 8 months in total to make sure Dissecting cellulitis never comes back!
My son was recently diagnosed but has had this condition for at least 3 yrs. We have an appt to see Dr. Hamzavi in Detroit for possible laser treatments. Please tell my if you have had experience with the laser treatment. I am wondering about the frequency of visits, cost etc. We live in Missouri and will have to travel 8 hrs to get there.
Hi everyone. I am wondering if really short haircuts have anything to do with DC. Jasmyn Nash, have you ever cut your hair off really short?
Below is a comment I left on WebMD site: https://forums.webmd.com/3/skin-problems-and-treatments-exchange/forum/3812?pg=2#17
“I am a 58 year old Black woman and have been wondering about what I had in common , other than my skin color, with Black men; I had my hair cut really short more than five years ago, and a few months later my scalp started being really dry and itchy.
I couldn’t even sleep at night for scratching. After some months, I had to be more careful when I scratched because little bumps started rising and the pain was great if I happened to hit one.
I noticed a spot on top of my head that I couldn’t discern as being a grey patch or a balding spot.
Since no one ever commented on the spot, I figured it was just a grey patch. Until it got bigger. Itching, balding, sores, scabs–repeat, repeat, repeat.
I have read some theories that the short hair cuts may contribute to the Dissecting Cellulitis (had to diagnose myself because my dermatologist and internists did not have a clue); and this has made wonder about the White men who have been diagnosed with DC.
If any of those afflicted with this are White, would you share with the rest of us information about your hair type and hair styling. Did you wear your hair short, and do you have courser hair like some Jewish, Irish and other fair skinned people I have seen?”
Here is a reply I got 5 days ago:
“I am white male), 42 years old, dark somewhat wavy hair, I have this condition. I have always thought this may be due to short hair-cut with clippers. I wore baseball caps and bike helmets with short hair and later developed this condition. I was not diagnosed until recently. In my experience the areas I had that have healed took about 16 months to heal with no meds, and did heal without scars-the hair came back. I currently have one area that is bald and raised on the crown of my head. I saw a dermatologist recently as I was concerned of skin cancer. He diagnosed dissecting folliculitis and I am now on doxycycline monohydrate 100mg twice a day. The treatments that I have felt helped healing are limited to tea tree oil and jojoba oil. In my experience many of the anti-dandruff treatments, or things that dried the skin, made this worse. in my experience it seems that the infection or inflammation is deep in the scalp and softening the area helped. Good luck everyone.”
hi all my husband was diagnosed with this about 2 years ago, we finally found a doctor that’s knew how to treat this. My husband has been taking rifampin and clyndomycin twice a day, which was working very well and getting injections every 2 weeks. The doctor told us about accutane, however we are hesitant to try it because of the side effects. Recently my husband lost his job and is on Medicaid and our dr has been treating us , let’s say, not up to par.
So I was wondering if anyone in the New York area knew of a good dr who treats this condition?
I’m 25 and i have this all so long nog, its 8 years. The disease is now stopped, for now… but i have so many scares :( Sometimes i want to kill myself, because this disease had ruined my life completely :( I hope there will be a cure in the future, because nobody deserves that disease.
Liz,
Dr. Neil S. Goldberg diagnosed and treated me, he is in White Plains, NY.
Brent,
Scaring is tough to deal with… I’ve had to re-invent a new hair style to deal with the scaring… and the questions from strangers don’t stop. So I can somewhat relate… but in the end I feel like it’s made me stronger and healthier; more conscious of who I am and how to live my life. Actually in some cases I’ve used it as a way to start up and/or continue conversations with strangers whom later I come to find out have deceases you can’t see but they have struggled with their whole life’s. One had a severe spontaneous diarrhea issue which had caused him to lose jobs… in the end, this disease is tough and challenging to say the least but like I said in one of my first posts, it can also be used to your advantage by putting a positive spin on it through developing a healthier physical and spiritual lifestyle. I’m glad the incidents have stopped for you; after almost a yr of no incidents I just had one visit me on Sunday and it drained on Wednesday… my fault, too many pizzas, a few more beers and less than 6 hrs of sleep will do that. Now I’m back to eating healthy/exercising and I’m feeling better with my overall self every day (no incidents since). I have to say that if it wasn’t for the disease I would still be out of control treating my body like *ish. Good Luck to all.
I have had for 23 years and tried a lot of what everyone on here is going through. here are some things I have researched over the years. depending on which Dr you get you’ll get either diagnosed as Dissecting or Folliculitis Decalvans. From reading it seems some are more severe than others but we all share the pain that comes with these issues.
Minocycline and Rifampicin for an average of 11.7 weeks was effective in treating three patients, in which Minocycline failed as a monotherapy. Combination of Clarythromycin and Rifampicin for an average of 10 weeks was also effective in clearing scalp lesions in two patients
oral rifampicin and oral clindamycin together for 10 weeks
treatment with oral rifampicin was started at the dosage of 450 mg twice per day.
RESULTS:
After 3 weeks of therapy, the pustular lesions regressed completely and after a follow-up of 1 year no relapse was observed
combination therapy consisting of oral and topical fusidic acid and oral zinc sulphate
Patients with mild FD were started on Minocycline 100 mg twice daily, orally. Patients with moderate FD were given a combination of Minocycline 100 mg twice daily and Rifampicin 150 – 300 mg twice daily. The adjuvant drugs used were topical fusidic acid or mupirocin, selenium sulfide shampoo, oral compound glycyrrhizin, and zinc gluconate. The patients were reassessed after two weeks. Patients with deteriorating clinical symptoms, development of new skin lesions, and expansion of the involved area were given additional Clarythromycin 250 mg twice daily and/or Acitretin 10 mg once a day.
RESULTS: The success of treatment with clindamycin and rifampicin, clarithromycin, dapsone and isotretinoin was analysed. The evaluation of the combination of clindamycin and rifampicin showed the lowest success rate in achieving long-term remission, since 80% of the patients relapsed shortly after end of treatment. Clarithromycin and dapsone were more successful with long-term and stable remission rates of 33% and 43% respectively. Treatment with isotretinoin was the most successful oral treatment in our analysis with 90% of the patients experiencing stable remission during and up to two years after cessation of the treatment.
CASE REPORTS: The patients were treated with dapsone at a daily dose of 75 and 100 mg, respectively for 4 to 6 months. After 1 and 2 months, pustular folliculitis progressively cleared, leaving a residual non inflammatory cicatricial alopecia. When maintaining a dapsone dosage at 25 mg/day no relapse occurred during 3 years and 1 year, respectively. No important adverse effect to dapsone was evidenced. After dapsone withdrawal, a moderate relapse of the disease with pruritus and folliculitis occurred after a few weeks in both cases. The disease relapse rapidly cleared after dapsone reintroduction at a daily dose of 25 mg.
COMMENTS: Dapsone at moderate dosage was well tolerated and rapidly effective in treating the two cases of folliculitis decalvans. A long term and low dose (25 mg daily) maintenance treatment avoided disease relapses
disease treated successfully with Tacrolimus ointment.
Successful use of infliximab in a patient with recalcitrant folliculitis decalvans.
RESULTS: Initial management consisted mostly of intralesional triamcinolone acetonide, clobetasol lotion, and either cephalexin, minocycline, doxycycline, or tetracycline. Alternatives consisted of rifampicin, clindamycin, ciprofloxacin, and isotretinoin. Remission was achieved in weeks to months in more than half of the cases, with low occurrence of relapse. The poor responders had a protracted course of temporary improvement and multiple relapses.
triple therapy with isotretinoin, clindamycin, and prednisolone
Therapy-resistant folliculitis decalvans and lichen planopilaris successfully treated with adalimumab.
rifampin 300 mg b.i.d. with cephalexin 500 mg b.i.d.
Long-term remission under a combination
of zinc sulfate and oral fusidic acid (13,41) or
topical erythromycin 2% (43) has been reported
2% mupirocin, 1% clindamycin,
1.5% fusidic acid,
Ciprofloxacin or clarithromycin can alternatively
be used in combination with rifampin
Drugs commonly used in combination include clindamycin 300 mg twice daily, fucidic acid 150 mg three times daily, ciprofloxacin, doxycycline and clarithromycin
er ruling out latent tuberculosis and hepatitis B, we started adalimumab at a dose of 80 mg administered subcutaneously followed by a dose of 40 mg 1 week later and an additional 40 mg every second week. As is customary at our department, at every visit approximately every month patients were asked to indicate their subjective burden of disease on a scale of 0 to 10, with 0 indicating that the patient is free of disease and 10 indicating maximal burden of disease. Nonsystematic retrospective case studies such as this qualify as off-label use not requiring ethics committee review in Switzerland.
it was found that adalimumab, at standard dosing of 80 mg subcutaneously (SC) for the first week, followed by 40 mg SC in the second week, and then 40 mg SC every other week thereafter, resulted in an appreciable response. At a one month follow-up visit, the patient reported that the pain and purulent discharge had stopped. At a two month follow-up visit, the patient had evidence of hair growth and at a five month follow-up visit, lesions had cleared and hair was growing normally. Adalimumab was continued [9]. In 2010, three men, aged 27, 29, and 30 years, with treatment refractory disease were treated with standard doses of adalimumab. Clinical symptoms subsided within eight weeks of treatment in all three patients. After three months, clinical activity and subjective symptoms were reduced. However, biopsy findings during treatment demonstrated that, although the inflammatory infiltrate was reduced in two of the three patients, preexisting pathologic residual structures, such as subcutaneous sinus tracts, remained unchanged. Ultimately, when treatment with adalimumab was paused in patients after months of successful treatment, disease activity returned within four weeks and adalimumab had to be started again [15].
Of these, an extended course of oral isotretinoin appears to be the most effective
They couldn’t tell me what my immune system was overacting to, but the prescribe “Remicade” infusions.
I wish to report some initial positive results I discovered by accident.
I first tried light therapy on my DC scalp. that did not work.
My derm then prescribed doxycycline. that had zero results. he then switched me over to a combination of clindamycin and rifampin. that helped provided some initially relief reducing inflammation, but the DC continued to spread.
I quit tanking the clindamycin and rifampin combination due to negative side effects and diminishing effectiveness. on a whim, I got some oral terbinafine tablets from a friend and took it as perscribed to him for toenails since I had same tonail issues. the odd side but positive side effects of the oral terbinafine is it cured by dandruff, scalp itch, eczema, and psoriasis. it also flattend out my DC and made affected areas shallow, so the pain and numbness was not as deep and feeling and sensation returned without pain or itch.
I need to add that when I started on the oral terbinafine, I also started taking daily multi-vitamins and probiotics.