Writing an article for Medium - need help with stats/ facts

[pursuit_of_happiness]

Hi guys, I haven’t posted on here for a while. I’ve had PFS for six and a half years and I’m a freelance journalist. I’'ve written an experience piece for Medium, and it should be going up on the site fairly soon. I’ll post it on the forum when it’s up.

I just need a bit of help with one or two facts, specifically, what percentage of Fin users are thought to get PFS? The 2% figure sticks out in my head. If anyone has any substantiated numbers could you let me know here, with a link too? Also is there any proof that Merck asked YouTube to bring down PFS personal story videos?

[pursuit_of_happiness]

*I understand that PFS figure might be impossible to really know

[axolotl]

Hey, that’s great to hear. I posted a few links regarding numbers here which may be interesting to you:

Predisposition May Be A Non-Factor

There’s also been cag repeat lengths correlated with symptoms in a study, and a father and son getting it. But pvdl and notna took it at the same time and got PFS in what they called “lock step”, with identical symptoms. There’s undoubtedly a predisposition and within that it’s obvious it’s variable as to what’s going to be needed, but I’m as severe as it gets after one 0.25mg dose (had 2 pills six years before). There’s also many instances of people doing strange dosing documented on hair loss…

[gents93]

I can’t remember if I read 2 or 4%, but Axolotl is right, PFS is incredibly rare.

[Frustrated]

Beknap has done some epidemiological studies. This study and another showed that 1.4% who took the drug developed PED. It’s really not nearly as rare as these hair transplant surgeons like to suggest it is.

Persistent erectile dysfunction in men exposed to the 5α-reductase...

[awor]

Thanks for doing this. For stats, please see the Belknap study posted on the Post-Finasteride Syndrome Foundation website: http://www.pfsfoundation.org/tag/steven-m-belknap-md/

Just for reference, this site is getting over 70’000 visitors per month (growing rapidly) from every single country in the world, bar about a half a dozen west/central African countries. This of course does not mean that all these visitors have PFS, but the interest in what is going on here is considerable.

When you write your article, please mention this site, which will help others find it.

[iull1k]

Hi. Please do not forget to write about similarities between SSRI/FIN/Isotretinoin/Minoxidil and so on.

[iull1k]

@awor

70’000 visitors per month (growing rapidly)

Do you talk about unique visitors? Thank you

[pursuit_of_happiness]

Thanks for the replies guys. I’ll try and cover all of them here. I’ll post the article on here, I certainly mention this forum in the piece as it was my only source of information and community over the years, and in a sense I’m writing it for the good of all of us.

I currently say how many forum members there are (around 4000) but 70,000 unique visitors is a good point to include too and I will. It seems to infer there being more than 4000 PFS sufferers in the world.

On the PFS prevalence figure, I guess there are shades of grey here in that perhaps you can be a fin user and have a degree of permanent ED but not have PFS as we know it, with all the various side-effects - I suspect the number of men like that to be far higher than 1-2% of total users, in fact some of the studies I cite definitely do. But I’ll probably go with that Beknap number.

My article will be written anonymously, but it’s possible that I might be able to write another, long form article about how this happened at all, looking at Merck, big pharma, deregulation in the US, the race for a hair loss cure and the experience of the PFS sufferers.

Cheers

[Tzinkman]

It seems rare when looking at the official figures but it doesn’t feel rare when it happens to yourself the way it’s happened to me. The way it feels to me, if I took ten guys, gave them 0.25mg each for four days (which is what I did) then withdrew the drug, i’d be very surprised if not one of them suffered at least a “mild” crash. In fact, if the safety trials for this drug were carried out again but this time they gave it for very brief periods then discontinued, i’d pray for the test subjects.

[pursuit_of_happiness]

Well 1% of 1 million would still be 10,000, which is still a huge number in real terms. I’m unsure of the actual number of men thought to have taken finasteride since the 90s, but over 500 million finasteride pills were sold last year in the US alone.

[pursuit_of_happiness]

Did Merck make YouTube take down videos of guys talking about their PFS condition, and if so anyone know where I can find proof of it?

[pursuit_of_happiness]

I’ve posted the Medium article here: My PFS Medium article (Link)

[Milando97]

i also think its likely higher when you take it very shortly and then discontinue. but the same when you take it long , make a break, start again and then discontinue very shortly after restarting. strange but i think thats a trigger for pfs

[George25]

Many people here take it for a brief period then cut and get better in a few months without any problem ,and many other take it for years start to have symptoms quit and worsened. i disagree with you, the more time you take the more chances you have to developed it, its logic.

[Greek]

@George25

Many people here take it for a brief period then cut and get better in a few months without any problem ,and many other take it for years start to have symptoms quit and worsened. i disagree with you, the more time you take the more chances you have to developed it, its logic

Nope. Some very servere cases are ones who have had the least exposure.

[George25]

Yeah but i dont think the cause is quiting it early or later the cause probably is in your body in your genetic or so not in the time of exposure

[Greek]

@George25

Yeah but i dont think the cause is quiting it early or later the cause probably is in your body in your genetic or so not in the time of exposur

That is at odds with what you said earlier.

@George25

the more time you take the more chances you have to developed it, its logic.