Propecia and Persistent Erectile Dysfunction and Post Finasteride Syndrome
(Since these topic tend to be hot debates, the following was taken from a comment section from a recent post) The statistics posted in this blog entry are not correct. The frequency of ED in men in the 20s is much lower than 20% and it does not increase linearly by 10% every decade. It would be nice because the numbers are convenient, but it just simply isn’t empirically observed.
If you look at the Propecia clinical trials which included men under the age of 40, only about 1% in the placebo had sexual problems of any kind. A lot of hair transplants make the argument that sexual dysfunction is common to minimize the likelihood that sexual problems are caused by Propecia, but this is never backed up by fact mainly because it isn’t true.
It is true that it has not been studied in detail how PDE5 inhibitors will affect men suffering from finasteride related side effects, but many men who develop irreversible side effects also report limited benefit from erectile dysfunction medications. These drugs work for certain types of ED, psychogenic ED included, but it is commonly observed that they are not very helpful for men with post-finasteride-syndrome.
The exact number or statistics on erectile dysfunction (ED) may be of debate since most of these studies are based on self assessment and honestly reporting that they actually have ED. For example, if you wear women’s lingerie, have a small penis, or cheated on your spouse, etc would you honestly answer such personal or embarrassing questions? The answers and its accuracy can vary widely depending on the setting of how the question was asked and even who administered the questions. You can lie just as easily based on the person’s agenda. I use the prevalence of ED numbers more as a generality. You can find evidence on the Internet that may affirm the statistics or disprove it.
As to the persistent side effects of Propecia and post-finasteride syndrome discussed around the web I think it is difficult to confirm. Most of it is “speculation” as noted even by the scientific community that supposedly study the phenomenon. It’s based on self reporting and never clearly back up. You’re basically trusting someone’s word that they cannot have an erection or orgasm.
If you really look into the websites that report these persistent side effects of Propecia/ finasteride, the hidden agenda is a legally motivated.
There are so many other medications (that is used to treat depression and anxiety, such as Zoloft, Lexapro, Xanax, even good old fashion alcohol and marijuana use) that can have a much more profound effect in orgasm, sexual desire, and erections. These are never discussed in the context of Propecia and ED.
I am not dismissing the idea that there may be long term issues with Propecia. It just seem strange that I have not come across someone with these long term side effects in my 23 years of practice.
This blog is a hotbed of misinformation so let me clear up a few misconceptions. When you say you use these numbers of ED as a generality, you are still making them up. You will not find a study that vouches for the numbers you quote which is why you haven’t cited any. Any man in their twenties with at least ten close friends can confirm that the percentage with ED is far less than 20%. If you speak with any experienced urologist, he/she will tell you the condition is virtually unheard of it in this demographic.
It is completely incorrect to say that the scientific community that studies post finasteride syndrome considers it to be ‘mostly speculation’. I have spoken with several scientists and physicians who are studying the syndrome and not a single one would agree with this statement. They would agree, however, that many hair transplant surgeons exploit the fact erectile dysfunction is difficult to measure to deny the existence of the syndrome. However, while it is difficult it is very possible to do so as there are objective tests.
One objective measurable factor is reduce semen quality/volume with an abnormal consistency which is a known side effect of Propecia and commonly reported among post finasteride syndrome patients. A paper by Dr. Irwig gathered semen analyses from people that were reported to have post finasteride syndrome. It was no surprise when many of these lab samples demonstrated these exact characteristics – low sperm count, reduced volume, low viscosity, abnormal morphologies etc.
Post finasteride syndrome is a very underdiagnosed problem because hair transplant surgeons have not made a good faith effort to evaluate and work with patients who have the syndrome. For example, this post claims Dr. Rassman has never come across a patient in his practice that has reported long term side effects but this completely contradicts an earlier post where he admits to haven spoken with somebody who reported this. This is conveniently ignored.
While there are law firm blogs looking to recruit plaintiffs that discuss the syndrome, these are in the minority of blogs that report on post finasteride syndrome. Blogs and reports have appeared years before there was any legal initiative and it is simply dishonest to represent this as a legally motivated issue. The truth is that post finasteride syndrome is such a humiliating condition that many men who suffer from it sometimes choose not to even seek justice because it is so emotionally painful for them to do so. I really don’t know why anybody would lie about their ability to achieve an erection or orgasm which is basically the accusation embedded in this recent post. The patients who I have spoken have been discarded by the hair transplant surgeons who prescribed them these drugs and it is about time somebody stood up for them. I don’t see this happening by any of the contributors to this website unfortunately.
As an aside, this avatar is a very transparent attempt to accomplish what you are trying to achieve. I will leave it at that. My goal is merely to clear up misconceptions for readers of this blog while protecting myself and nothing more.
I expect BioTech MD will shortly respond with another attempt to misdirect readers.
“Researcher” seems more intent on personal attacks on posters and bloggers, including Dr R and BiotechMD, than presenting data (i.e., compare his arguments – which are primarily emotive – with that of BiotechMD, which are data-driven and referenced to allow readers to examine the literature and make their own opinions). In addition, in contrast to “researcher”, BiotechMD – who as an MD/PhD with industry and FDA experience and has posted multiple guest blogs for Dr R on non-finesteride topics – argues for more scientific investigation and does not speculate on the “expertise” of those he has a difference of opinion with. Indeed, in a prior blog response, BiotechMD provided the exact reference of a study that formed the basis of the ED estimations made today. The best service scientists can do for the sufferers “researcher” mentions is to subject this issue to true scientific inquiry, which seems absent in the medical literature.
Researcher – as with his above mention of Dr Irwing’s study – doesn’t quite understand the difference between correlation and causality, which seems surprising. Dr Irwig’s article, published in JAMA Dermatology 2014 Sep 17 issue, is not a study but a 1-page research “letter”, which is a format intended by the journal for interesting observations. His final paragraph is ” limitations of this…..study include lack of baseline androgen levels and semen parameters, selection bias, and small sample size. Another limitation is that serum androgen levels often do not reflect tissue levels”. Dr Irwig correctly argues for further research, something it seems that the post-finasteride crowd doesn’t quite get. To them, everything has been figured out – because of their own situation or anecdotal histories of others.
Regardless, Dr Rassman is spot-on: the “post-finasteride” syndrome has been poorly characterized in the medical literature and has not been subjected to scientific scrutiny (which can easily be done). Any clinical investigator with a large patient population can design a trial to examine use of finasteride and study the incidence of this syndrome and its basis after other causative factors have been ruled out. It is highly likely from the blog posts of those who feel that they have this syndrome that many of their reports are “not physiologic” and that other factors may be involved.
Finally, as a clinical scientist who has read this blog for years, I am also a fan of sports blogs. It is routine that sports blogs note “no personal attacks or insults. Please keep the conversation civil and help us moderate this thread by reporting any abuse.” I think diversity of opinion is good. But, as was argued for a post-finasteride fanatic from a few years ago, I would favor an increased vigilance to remove those blog posts that repeatedly have a highly personal quality in the absence of any real scientific discourse, and I think “researcher” has come close to that in his or her multiple posts to date.
As an addendum, the ” highly personal quality” I mention in my last paragraph was “researcher’s” attempt in a prior blog to “call out” BiotechMD’s qualifications when he disagreed with BiotechMD. Little did he know that BiotechMD was a guest editor on some prior topics and known to Dr R – and someone with extensive scientific expertise as a clinical investigator and physician/scientist that could be verified, if necessary – something that was revealed in BiotechMD’s response. But, as BiotechMD wrote, it doesn’t matter what the qualifications are – arguments should stand on their own. But, when posters demand – as “researcher” did – the qualifications of another, which is at the end of the day something that can be provided only voluntarily – they may be surprised. I have even read (in the old days) balding blog posters who have scrutinized Dr R’s impeccable CV and come up with multiple conspiracy theories related to imagined conflicts of interest and other irrelevant issues. These approaches completely distract from the issues at hand and are, actually, quite transparent.
I feel it is important to clear up some of the things you said that are not correct:
Much in line with my background, I am very supporting all possible intellectually honest research on post finasteride syndrome. A Harvard affiliated hospital is currently researching the syndrome and has been working a study for years. However, I reiterate that the other serious scientific researchers with whom I have spoken absolutely do not believe that post finasteride syndrome is “speculative”. It’s really completely off base that you think the “post finasteride crowd” is against research. After all, they are continuously suffering and it is likely only with research they will have any hope of reversing the damage that has been done by Propecia.
Let me clarify why I used Irwig’s recent study as an example since you didn’t seem to understand. Both you and Dr. Rassman have suggested that PFS patients are not actually suffering from physiological problems. Dr. Rassman went so far as to say “you are basically trusting someone’s word that they cannot have an erection or orgasm” implying that some people are outright lying. Dr. Irwig’s study shows that this not true. I did not bring it up as a commentary on Propecia’s role in the matter, but it is measured evidence that many of these men are facing real physiological problems as was indicated by hormone imbalances or semen abnormalities. If the cause of their suffering was not physiological, the results would show they were completely normal which did not happen.
I am a little surprised that you think you can easily study PFS using scientific inquiry, especially given you present yourself to be “Researcher MD”. Post finasteride syndrome affects a small, unknown percentage of men that take Propecia. For this reason you need a very large sample of men in the thousands or tens of thousands to accurately assess the likelihood. Pharmaceutical companies are the only institutions that have the resources to do research on this scale and I can assure you that Merck is not interested in proactively investigated this issue. Secondly, I am sure you are familiar with the role of the IRB (Institutional Review Board). An IRB would certainly not approve an unethical study to administer a drug to patients to measure the frequency and scope of the damage it causes to the subjects who take it. For this reason, the medical community has to rely on case series, data collection through the FDA, and “natural studies” of patients who have already taken Propecia and developed persistent side effects. The literature already clearly shows the existence of post finasteride syndrome and its cause, but the scientific research process for studying adverse events cannot and does not follow the typical research process for clinical trials for reasons I just explained. You already should know this though since you are Research MD.