Hi, not sure if this is considered an appropriate topic, but I was wondering what the actual chances of persistent side effects are. There’s probably thirty million men worldwide taking finasteride, with 230 having gotten to the point where they do the survey on this site, the main support forum for the PFS condition. That’s 0.00000766666%. That’s nothing. I took this drug for 4 days and despite some improval, still have some definite ED, slight brain fog, and definite testicular atrophy. I took 2mg total. According to wikipedia, there are people who have taken 80mg/day for 3 months with no side effects. What the hell are the actual chances of getting this thing? 1%? 5%? Obviously it’s way higher than my example of the survey takers, but it does seem stupidly unlucky, especially if you only take it for a very short amount of time.
What determines PFS? I believe the number is much higher but a lot of victims aren’t even aware of their condition either because they were affected so minorly or they just didn’t put the pieces together. Finasteride literally works by downregulating androgens, which in theory should affect everyone’s bodies in some sort of adverse way, it just may not be a change significant enough to be called “PFS”.
Probably around 1-2% will have noticeable persistent side effects at a level where it effects quality of life drastically.
It took me 18 years to find the cause. I’ve come across 5 cases outside of the forum via general discussion. This is a lot bigger than the publicised statistics
I’ve found many ppl who have PFS from minoxidil on reddit.
This is interesting to hear because when i first “crashed” at the age of 16, i only had low semen volume. And it wasn’t that low, it was just lowered a bit. But i could feel and see something was wrong… and then new symptoms came and things worsened over the years. I hope it didn’t affect my height and growing or whatnot.
I asked my doctor about what if the androgen downregulation was tissue spesific and not consists whole endocrine system. And he said yes, it could probably be like that. But i think doctors gives you the soothing answers just to make you shut up and move on… idk. I hope it didn’t affect my whole system.
Yeah pfs is more common than public statistics. I agree btw.
Would be good to direct them here to take the survey. They have not been a focus group for us so far, but if there is a good amount of people, it may be worth considering them.
What @LazarusRy says is important, imo.
There will be many people who are affected but don’t make the connection.
There will be people who have mild symptoms but don’t necessarily realise.
What’s significant here is that we have found that if you are exposed repeatedly then symptoms can multiply and increase in severity. Why is that important? Because you could take one drug, get some mild symptoms and convince yourself that “well, I’m not 18 anymore” or even realise but recover from the symptoms “I couldn’t sleep properly when I was on X, I won’t take it again.” At this point you could take another substance, maybe it’s a herbal remedy, maybe it’s for a rash you’ve got, something completely unrelated and then you’d be hit with a violent and catastrophic reaction that could leave you unable to function.
At that point what caused the reaction? Do you trace it back to the first drug where you couldn’t sleep? Or the second one where you can’t sleep, think, have sex, etc? Probably the second.
And so, lots of “our” patient group don’t realise they’re in our group.
We believe that once more is known, that the condition we have will be labelled as the same as the one that people in other patient groups have. The trigger drug may not be the same, people may not have even taken the same thing ever but the outcomes are the same.
We are a small group, but there are many more out there that should be counted with us.
It’s one of the reasons why we need more people to be prepared to speak out. The more people who hear about this, the more people will come forward. Including those who didn’t even realise they had this condition.
What do you and @LazarusRy make of the fact that extended trials have been done that do show very low rates of side effects? Presumably, there would be no ambiguity in the trigger, in that situation. There’s also that famous study that PFS-deniers like to point out, where more people reported side effects on the placebo than on the actual drug. Very strange, I feel.
Including in the marketing videos of multi-million dollar valued, online finasteride vendor Keeps
“HAVE THE SIDE EFFECTS EVEN AFTER THEY STOP THE PLACEBO AS WELL”
Urgh, we have to mention that some side effects persist after the medication is discontinued
“…”
“AND IN ALMOST EVERYONE IT IS REVERSIBLE”
These companies are so desperate to keep selling this drug that they now have to strain to present it as not a big deal to use when existing evidence and two decades of patient reports say otherwise.
I think at least 1% of finasteride users will get PFS in some form.
I don’t think anyone would take fin if they knew that permanent side effects was even a possibility.
Hence Merck burying the side profile list
@Tzinkman @Greek @Zonz @LazarusRy – What do you make of celebrity use of finasteride? Ashton Kutcher supposedly used dutasteride for like a decade. And finasteride is used in hair transplants for like 6 months if not for life, and that is a procedure taken by tons of sportsmen and actors. Are there no celebrities who are unlucky with this drug?
There’s a number of suspected celebrity pfs people, but it’s all speculation, as far as I know.
There was that one celebrity that said “I would inject Finasteride directly into my bloodstream if I could” and his kids are two very obviously stunted and androgynous individuals.
Wow. Similarly, there’s an episode of the US version of The Office in which Steve Carell’s character mentions Accutane and Propecia. The actor himself seems to have certainly had a hair transplant and presumably finasteride since the first season, very weird that they have had no side effects and feel fine including this stuff in their creative projects.
Robin Williams and Michael Jackson were victims of it. Justin Bieber seems to be showing symptoms. Speculation of course. There will be many celebs im sure but coming clean, admitting could detrimentally effect their career opportunities as it his for many on the forum.