I was looking into starting fin as a nw2 to hold on to my hair prophylactically. Initially I was very much in the camp of people who learnt about 5ARi’s in medical school, and completely did not believe in these persistent sides sufferers with PFS - something which I thought definetely sounded psychosomatic. However, being a med student, and being used to researching all facets of any lifelong medication I wanted to put myself on, I eventually started to see more and more evidence that PFS was real, and very much an organic condition as opposed to the commonly held notion that it is predominantly psychosomatic. Following on, i read up as much as possible and now genuinely feel for this community, for the condition, but also because of the perception of people like myself previously toward PFS (due to the way this is explained in medical school/the studies which were used to FDA approve this drug etc). I’d like to join the community and help work towards a solution in the long run. I have yet to decide whether I will start taking Fin.
Mate, just stay away from fin. After seeing all the evidence, it is quite surprising that a final year med student can still be unsure about taking it. Any input is appreciated though.
Yeah, I’m leaning towards not, but when you’re a young guy vanity can often supercede logic I guess. The other thing is, it is a very small minority of people that seem to get stuck with these permanent side effects - but yeah it is a gamble.
What I’m most interested in are the theories associated with why this happens. The fact that a lot of posters seem to get a transient improvement of symptoms when they take anti-androgens again is also really interesting, I feel, because it could suggest that returning to and maintaing a ‘normal’ state should theoretically definetely be possible, if not now, at least some day in the future, when we get to the root of what exactly causes this - it may not be a simple magic pill cure, but it might allow sufferers to artificially stay in that ‘temporary’ state indefinetely.
Whatever you guys do, however hard it seems, don’t lose hope, don’t give up and keep this battle going. This community has already made some great strides just with the studies and so on that have been done and collated which now clearly show, in measurable quantifiable data points that this is very much a real and clearly debilitating syndrome. I’d say don’t live your life waiting for the answer to come, focus on other things where possible, and continue to live life as much as possible, but in the meanwhile don’t lose hope for better days either. I will definetely do what I can. I’m in the middle of finals right now but I intend to raise this with my seniors and see if they have any thoughts at all. Not sure how helpful it will be, but surely some of the top researchers in neurology, endocrinology and biochemistry who may not have been exposed to this yet will have some thoughts on it.
Does anyone know if there’s been any research done or data gathered regarding neurosteroid levels in ‘normal’ men after discontinuation of a 5ARi they’d previously taken?
Welcome, any help is amazingly appreciated.
Great question, of course there are control groups in almost all the studies (of which there aren’t a TON). But in regards to gathering data ‘normal’ patients who have discontinued FIN, that would make for a great comparison. @awor @axolotl @Northern_Star and @Mew are typically your best bets for these kinds of questions.
Thank you! I was hoping for something like this, but unfortunately I can’t access the full text to check whether the controls in this study had taken fin previously and discontinued or were never exposed to 5ARi’s.
How do you know it is a very small minority? Was there ever a clinical trial conducted to measure cumulative risk of developing PFS after stopping finasteride as a function of time on finasteride, for example? Clearly the answer is no. Was there ever a study conducted to measure penile shrinkage, independent of PFS? Rats seem to get that in scores… There was a time when sexual side effects from antidepressants were also believed to be in the low single digits, following results from clinical trials. Now we know that virtually everyone gets sexual side effects while on SSRIs. Nothing to speak of withdrawal from benzos and SSRIs which was portrayed to be a non-issue (and also affects virtually everyone, often for years). You really should know better than to trust publications in your field, which is rotten to the core.
I see you come here and mean well, but should be aware that it is fucked up to tell us how to live our lives as someone who cannot possibly understand what it is like to have PFS and openly debate in front of us whether or not you will consider trying the drug.
That said, honest support from the medical community is very welcome of course. Lots of theories as to what may have caused this but nobody really knows for sure. Dr. Melcangi from Italy seems to be doing the most promising research IMO to gather a better theoretically understanding of what may be going on. Read some of his research about testing neurosteroid levels in the CSF of PFS patients. For some reason, PFS patients don’t seem to be producing allopregnanolone anymore. Some people theorize the drug may have flipped an epigenetic switch that changed a setting in our neuroendocrine systems. Just theories for now but we’re starting to gather real data.
As an aspiring doctor, pay close attention to how the medical community was so slow to respond to this health crisis and how Merck took efforts to rig public and medical opinion to protect themselves against legal liability and sell the drug. They’re quite a bad offender but not the only ones out there.
Hey thanks for posting Throwaway. If I was never affected in a similar fashion to the way PFS patients have been affected (to sum it up I believe I have an analogous condition with the estrogen receptor), I too would also think this is psychosomatic… especially the way some
of the users post on here, which cannot be blamed when you’ve had your life demolished with no answers from the medical field.
I’ve deeply involved myself with science my entire life. Graduated with a bachelors in cell and molecular biology and have a bachelors in nursing as well, both honors graduate. About to begin a high intensity ICU job in a hospital that lives and breathes evidenced-based practice. So based on that, believe me when I say this, I believe in reproducible scientific research to create what we call Dogma or Causation. Unfortunately, I’ve been struck extremely heavily with symptoms I have never had in my entire life, no one in my family has, symptoms that I get from things that I never had before when taking them, nor that I knew could even exist. So now, I deeply believe science has missed this issue due to the organic complexity of it that medicine is just beginning to scratch the surface of.
Also, congrats on being in your last year. I hope you match in something you really enjoy! It sounds like you’re going to be one of the few physicians who are willing to keep up with advancing medicine.
Okay, it may be more people than we currently estimate based from studies, however there ARE a significant majority of people who aren’t affected by these drugs in the same way that people on this forum are, and that’s what I was trying to get at.
This is also why I’m curious as to if there have been any studies similar to the one I’ve linked in which PFS patients have had their CSF neurosteroid profiles analysed in comparison to others who have taken 5ARi’s.
We usually agree on many things, but in regards to proportion of people affected to not affected I would actually disagree and estimate it’s a very, very small minority.
Dr. Belknap put out a statistical study that estimated 1-2% of people who take Propecia develop PFS. I wouldn’t consider that a “very, very small minority” when you consider you risk very long term life-altering side effects for something as superficial as hair. The bald look is in now anyway.
Stay away buddy. I wrote this about my experience with PFS: https://medium.com/s/story/my-life-has-been-ruined-by-an-anti-baldness-propecia-finasteride-side-effects-ed8b2fcd1e90
My bad, I realised how insensitive that was off me only after you’ve pointed it out - I can assure you I didn’t mean to rub salt in wounds, but I felt I should explain how I came to find this community, which was through my own research into fin for potential personal use. Nor did I mean to tell you how to live your lives- it was more my trying to show my support and the fact that despite initially being someone in the medical field who disregarded this minority down to nocicebo/placebo/neuroticism/psychosomatic related effects, I now fully can see and do believe there is some organic proccess at work here that as of yet hasn’t been fully understood. I apologise for my mistake on that front.
I have read around the neurosteroid level variation in PFS sufferers, and this is definitely one avenue I thought to hold potential for futher investigation, for sure. Are you aware of any studies yourself which compare these levels to others who have taken the medication but not suffered from PFS? Another area which I’m curious about is in regard to the AR regulation and sensitivity related theories, especially because this might be the key to the transient improvements and return to baseline many sufferers get now when taking Anti-androgens. There is a lot of neuro-endocrine questions I’d like to put to my professors just to pick their brains regarding this.
I was also interested in Dr A Jacobs posts regarding CAG repeats in exon 1 of Androgen receptors and this variation being a possible aetiology? I’m not expecring it to neccessarily be exactly this, but I felt that this line of thinking could be an interesting area to look into as well - but as far as I’m aware he seems to have done a U turn and came out suggesting its a psychiatric underlying cause in many sufferers now?
And yeah, this issue needs significantly more coverage and attention and I’m somewhat taken aback it hasn’t happened yet.
Thanks man, I actually have an interest in neurology and endocrinology which is another reason why this issue has particularly drawn my interest. I’ll definetely do my best to.
What did you take out of curiousity ?
I’d actually came across this post already! Ive been lurking for a fair while actually… I’m sorry for what you’ve been through, I hope we can achieve progress into this and understand it at some point not too long away.
Technically that’s not the right interpretation of his study. I have forgotten the details of the study but there are a lot of qualifications to the findings originating from the limitations of the data. One thing is he did not have a non-finasteride control group so he compared people who took the drug longer than an arbitrary number of days with those taking it for a shorter period. This by itself is problematic because maybe people who had early side effects stopped taking the drug sooner (this is going to underestimate the final number of affected people). The cited number is the difference between the two groups. Also, he only counted the fraction of affected people who sought medical care from their doctor, which obviously is missing a lot of people. I for example have never talked to my doctor about my issues. There are other issues that I don’t remember now. Bottom line is this number is the most conservative and lowest possible estimate of an effect and we know for a fact the true number is much higher due to the limitations of the study.
“I had previously written about whether the propensity of finasteride to cause lasting hypogonadism could be due to the development of partial androgen resistance and whether this relates to the number of CAG repeats in exon 1 of their androgen receptor.”
What I was saying was that the possibility that there are avenues such as these which could be explored with more studies is one which holds promise in my opinion, with regard to eventually developing some way to enable AR sensitivity and regulation to be returned to baseline.
Are there any PFS sufferers who feel they have had a complete recovery? I would also be interested in looking at their CSF neurosteroid levels.
Whilst there may be a proportion more sufferers than reported, my immediate thought would be that there can’t be significantly more - this issue would be far more public and far more well-known and recognised? Instead it seems to be a sufficiently small minority that it hasn’t even got the coverage it deserves as of yet in my opinion despite its debilitating significance.
Again, this kind of thinking - that somehow it would have become known if PFS were a bigger problem - is a big but common mistake. I can bring examples from many different fields where a phenomenon was thought to involve a small number of people - for years, decades, centuries and millennia - until the right conditions were created for information about the true prevalence to become known. (I will intentionally bring more “provocative” examples, even though I can choose from among hundreds of already settled cases in science).
You are a doctor so I suppose you know the history of the opioid epidemic. How many decades were necessary for medicine to get a clue that these drugs are addictive and deadly (and what flaws in the system, and in human nature, led to that)?
Benzos, which have been in use since 1960 and have been considered absolutely safe by doctors for 60 years, will one day, hopefully soon, be all but banned because they are worse than heroin, and information about that is beginning to spread, mainly thanks to internet forums (benzobuddies).
ECT damages the brain and is completely ineffective for depression (unless the brain damage is substantial enough to destroy higher brain function) and yet it is still legal and practiced and destroys a million people a year in the world. Why?
The SSRI withdrawal example I gave earlier in the thread is very cogent. Since 1987 SSRIs have been prescribed to people and for 30 years medicine did not know that SSRIs have devastating withdrawal effects in the majority of patients. This is still being denied by psychiatry at the highest level. Why?
If you are wondering about the bold millennia reference above - for millennia gay people did not exist. Official prevalence was 0 or 0.1%. You would think that somehow gays would have gained acceptance throughout time if they were a significant number, right? Wrong. We still don’t know the true prevalence of homosexuality but all the evidence shows it is closer to 20% than to 10%, let alone to 2-3% which was the “official” number mere decades ago (and still is in the censuses of most countries).
Here is a more direct cause for the low profile of PFS: there is still no article about PFS on Wikipedia, despite the overwhelming scientific evidence for its existence. Why? Wouldn’t the free market of ideas have made it possible for the truth to prevail on Wikipedia? Just read the discussion page on Wikipedia about PFS (where Belknap was banned) and you will see why - Merck representatives are controlling access to this topic on Wikipedia. (There are articles about corporate/special interests control of Wikipedia information). Corruption and special interests are very powerful forces - in every area of life.
Finally – the gay reference above wasn’t completely unrelated – there is an extremely strong stigma associated with PFS to the extent that virtually nobody who has it speaks about it publicly. This is worse, way worse, than sexual abuse or #metoo stigma.
PS. This postscript was added at a later time and is unrelated to my post above or to the topic of this thread. It is a reaction to the closing of this thread. While I disagree with the comments below that presumably became the reason for the closing of this thread, I believe that closing of a thread is an act of censorship. Censorship is wrong and will never lead to the advancement of truth.