Epidemology of pfs

#1

Hi, i just posted because i wanted to know how many people areaffected with this, i mean, not the 2 % thta merck and the dermatologyst say, i mean the real number. I know here are like 4000 people registered but many of them goes and other enter and many of the causes here are not exactly pfs (isrr, accutane other drugs) so for real, what is the real number or % affected by this. Is it truth that this is a very small minority?

#2

Most likely yes. Take this forum as a relative sample size. If you want increase it by 200 percent, still an extremely small percentage of the overall population that takes or has taken fin.

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#3

I know back when Merck did their initial testing with fin, they said 2% reported persistent sexual dysfunction. However, it is speculated to be around 5% because of those who do not report, but I guess relatively small percentage. Had they warned me of possible permanent, irreversible damage, I would’ve NEVER taken that crap.

I guess I could speculate this. I’m sure there are others out there like I was. In almost 19 yrs of having this, I’ve never told anyone in my family or my wife’s family about it until yesterday. I told my dad for the first time. I’ve maybe told 3 or 4 people over the years, and that’s it. I went into a bubble, stayed away from this site, and tried to pretend like the condition didn’t exist.

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#4

I have never seen any urologist or any kind of doctor that has had previous patients with PFS. And I have visited quite a lot of doctors over the last 8 years. All of them told me I was the first person to tell them about persistent side effects.
And urologists work with finasteride with many of their patients.
I am afraid we are a very small minority, but with devastating side effects.

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#5

Merck never once mentioned persistent sexual dysfunction in their clinical trial data.

@kan Probably very small, yet grossly under-represented minority. If the odds of developing PFS are only one in a thousand, this is small enough that a urologist might never have a patient describe PFS, yet large enough for there to be thousands of PFS patients worldwide.

Some related material regarding the clinical trials: New Study Released

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#6

I suspect there are lots of people that listen to their doctors and believe what the doctors are telling them that side effects after discontinuing the drug are not possible. Therefore there are people who are in denial and are naive about the situation. Merck is not honest with the stats, if they were they would lose money.

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#7

Yep, it’s all about money. They could care less who they help or who they hurt to get it. I think there has been a lot a dirty politics for money here and all of us were just casualties of their chess game.

@Dubya_B I didn’t just make that up off my head, I read it somewhere but sure as heck don’t remember where. Your source seems very reliable though and certainly makes more sense.

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#8

Yeah probaly thousand but in most of that thousand most people recover or manage to live “good” after months or a couple of years and then ignore what they had. In fact, the people who truly are severe affected with this syndrome to a point of being a disabled person or just thinking about suicide and dealing with this for decades and only worsening are a very very small minority maybe a few hundred or less

#9

The vast mayority of people with this syndrome move on and learn to live fine with this, yeah its a shit having no sexual life or having brain fog but you still can live fine with this, i recently speak with another spanish person who had this syndrome with many severe symptoms including cognitive and sexual and after three years yeah he said he is not the same as before and he is still not recovered from all but he is living a happy life still.

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#10

I’m almost to the point of being disabled from it, physically…

#11

What I would be more interested to know is what is, of the people who quit the medication, what is the prevalence of persistent sides? The fact of the matter is that many of us got much worse from QUITTING the medication. I had mild side effects but mostly quit because I didn’t want to pay for the medication anymore. If I was 85% of my baseline self while on the medication, I’d say I’m closer to 10 or 15% since quitting.

Truthfully, I don’t think I ever would have quit if I knew better. I would have been fine operating at 85% and waiting until we finally know the actual mechanism of how people go to shit when they quit/how to reverse it.

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#12

If you define no sexual life and brain fog as “fine”, I guess you are right. :smiley:

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#13

Are you attempting to say that things either aren’t that bad or that people seriously affected are so few that it doesn’t matter?

#14

Most people who take SSRIs and attempt to stop have long-lasting and debilitating withdrawal effects. The fraction of those who have taken them more than a couple of years will have severe, life-shattering and life-threatening withdrawal effects for many years. These people have no support from doctors, and few people in their life can truly understand and support them. That’s why they really benefit from online communities. The largest such community is survivingantidepressants.com. Yet, that forum has had only around 15k registered users so far, as far as I know. Think about the number of people in the world who have taken antidepressants. We are talking hundreds of millions of people. And yet, the most popular antidepressant withdrawal forum has only 3 times as many users as PropeciaHelp. What does that tell us about the percentage of people affected with a debilitating condition who sign up to online support forums?

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#15

There is people who don’t even bother to create an accounts in Propeciahelp and the other PFS websites. I know personally 2 guys with PFS and they don’t have an accounts in these websites. One of them was really severe case for 8 months, then he took Clomid and some other stuff and he is fine now, the other guy still lives with his tinnitus. Plus if you count the people who don’t speak English and have PFS, imagine what is the real number then…

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#16

Not to mention guys who took some natural supplement like zinc, soy, licorice etc. or crash dieting.

Its very unlikely they would ever find out about PFS.

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#17

I live here in spain and im asking people in hairloss forum talks snd people who i know had taken finasteride and slmost all havent experienced side effects with finasteride and when they experience them they disappear when they stop here in spain there are very very few people with this syndrome

#18

whats wrong with zinc ?

#19

And im not saying that this condition is not that bad i know that losing your sexual life is a shit and havin brain fogs and cronic fatigue can be very frustrated but the truth is the vast mayority of people get better with time.yeah many of them still have some sides but they usually get better. I notice that in this comunnity yeah its fine that you all support each other and post interesting things but you talk about this syndrome like if it is a sentence of death and your life is whole taken and thats not so for almost all people here,your still living and the most of you still have happy and funny moments with friends and family and can do sports watch movies go out with friends yeah maybe you would be 100 times better if you never have taken that shit but still you can enjoy life so stop being so pessimist about this because you can still move on and enjoy life even if its harder than when you dont take this pill, im very sorry for those 59 suicides from this syndrome i cant imagine what they were suffering but in fact there are many medicines that cause suicide ideation in fact 59 suicides is a very low rate yeah i know we sre talking about suicides and its something very severe but you know the most of you are not as bad for that. Im against propecia and i know that in a small percentage it can cause sides snd not only sexual snd i a more small percentage this sides are persistant but even in this small percentage of persistant the most of you are not as bad as thinking seriously about suicide. Your moving on and most of you recovering.

#20

You should let other people judge for themselves how strongly having their ability to sexually perform taken away negatively impacts their quality of life.

Have you ever been mocked and disgraced by a woman for being impotent, have your family members constantly questioned why you are always alone and don’t have children, or watched as all of your friends and family got married and had children, while you are unable to form a relationship?

You are also refusing to acknowledge the severe depression/anhedonia that often accompanies PFS independently from sexual symptoms. Not to mention those who are so severely affected physically and neurologically that they can’t function well enough to maintain a career.

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