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
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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.
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I’m not sure if there are studies comparing PFS CSF levels to others who have taken the medication. It isn’t easy to conduct the study or find control patients willing to participate.
Also not clear to me that Jacobs has done a U-turn. I haven’t look at the paper he published in years, but I think he was suggested certain psychiatric/personality factors would predispose one to developing PFS upon exposure of Propecia treatment. It is controversial because it sounds like he is suggesting PFS is not physiological, but it really isn’t the same thing. Given so many factors impact the human endocrine system (bio/psycho/social), it isn’t too unreasonable to think that some guys would be less able to withstand the shock of taking Propecia. It is also why this has gone under the radar so long.
Welcome to this forum. I am an administrator in this forum and one of the founding members of the Post-Finasteride Syndrome Foundation. As such, I was involved in various PFS research projects over the past ten years. I appreciate your interest in our subject. Unfortunately, a lot of nonsese theories have been tossed around over the years, specially also so from doctors. PFS is part of a bigger picture which is at the bleeding edge of current scientific understanding. Whatever they currently teach at medical school (I have taken some courses myself) will mostly not be useful for understanding this problem. The misdiagnosis rate from doctors regarding PFS is approaching 100%, and their track record in understanding this problem is extremely poor. Medical school is a big part of the reason for this. It may be possible that your involvement can benefit us, but you first need to get up to speed with the most current scientific knowledge on the subject. I can brief you, and help you in getting there. Write me a pm and let me know exactly what you have in mind and what your intentions are.
If you are just trying to make up your mind if you should take finasteride or not, then the answer simply is: Don’t do it. If you are genetically predisposed to getting PFS and take fin, you may be in for a very rough ride, which in the worst case will last for the rest of your life. I don’t think you’ll find anyone in this place who wouldn’t give all of his hair in return for a restored health.
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100 % agree. there are so many possibilities and the fact that many people get pfs after theyve gone on and off the drug multiple times make it much harder to guess how many people would be affected that take the drug every day without any break.
What have they taught you about the function of DHT and neurosteroids in med school? I know some people that went through pretty recently and they really don’t say much.
You’ve probably seen mention of a smallish biotech company called Sage Therapeutics which is working on some drugs that are allopregnanaolone or an analog of allo. They seem pretty close to approval so we’ll see if that works for PFS guys.
This has nothing to do with DHT as low DHT doesn’t cause these symptoms. This has everything to do with complex changes to our phenotype due to ligand deprivation in susceptible men.
For example, two days in a row I administered 5mg finasteride to a 75 year old male for BPH and he was an absolute pleasure to be around. He was still quite muscular and vascular. He’d been on finasteride for awhile. I didn’t even screen him for depression as per protocol because he couldn’t stop smiling and talking to me. There is clearly a genetic predisposition to experiencing adverse side effects for this medication which is what makes it completely unsafe for anyone to use since we have no clue what it is
I just took this drug a month ago thinking exactly what you were thinking, I experienced a crash and then weeks of the worst side effects I have and still am experiencing. When going through that much mental and physical suffering, hair loss becomes completely irrelevant. Many guys are bald and or have thinning hair and have great and beautiful women, in my experience any women worth your time couldn’t care less about it.
tl/dr: don’t take it
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For Gods sake DO NOT systematical alter your hormones and nuerosteroids, so that you can have thicker hair.
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Please respond to this so I know I have at least saved one soul from potentially falling into the depths of hell
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You didn’t even take 5-alpha reductase inhibitor so I’m not sure why you are comparing yourself to PFS patients, especially on a Propecia forum. Low DHT is known to cause some PFS symptoms like gynecomastia and others. But more importantly is the Melcangi study which shows allopregnanolone levels undetectable in PFS patients which isn’t altered by arimidex.
you clearly don’t understand the suspected pathophysiology of PFS if you don’t know why i am comparing myself to PFS patients… which i wasn’t even doing in my previous post.
anyway, i am fully aware low DHT can cause gyno but that’s a minor symptom compared to what i am referring to… such as penile atrophy pain and degradation, muscle wasting, prostate degradation and pain, severe neurological symptoms such as psychosis, and paradoxical worsening when androgens are increased.
and for the record, i could give a rats ass about melcangis study. it does nothing to explain to above paragraph.
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You’re clueless and shouldn’t even be on this forum. It’s particularly rich that you admit to administering finasteride to patients as a nurse without even following protocol.
You are wrong about Melcangi’s study. Allopregnanolone is a mediator for human response to stress and sexual function so it is definitely conceivable that it could cause any of those symptoms you mentioned.
I’m really am truly sorry that you too are suffering from health but you don’t have post finasteride syndrome because you didn’t take finasteride. My concern with you being on here is your arrogance and the fact that you muddy the pool of data that we have for people who took PFS. We don’t yet have answers, only clues and suggestions. Because we are already a small population, we need as clean data as possible.
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It is increasingly evident that not finasteride alone, but possibly any substance with endocrine disrupting properties, can cause what we probably inadequately call “PFS”. Progressive scientists (whom we are in contact with) and the management team of this site, are clearly seeing things move in this direction. I am in contact now with the medical student via pm and will take it from there. I am closing this topic as it is turning sour and there is nothing further to discuss.
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