Thanks for posting this. I’m pleased to see Dr. Irwig is still investigating PFS.
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“…An important pattern of symptoms was common among all cases who committed suicide in the setting of finasteride use - insomnia and persistent sexual dysfunction after medication discontinuation. …”
Well, that describes nearly everyone here, myself included.
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Tbh, I kind of understand some of the comments that dismiss this. Doctors aren’t less superficial than the rest of us. The drug is approved, many people use it without issue, superficially it does not seem like this drug could cause suicide. So, confirmation bias kicks in, and you can easily dismiss this with the “small sample size” argument. It may be worth to step in and present some of the other literature. Some of these people may come around when faced with more evidence.
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Looking at those replies. When patients express clearly their doctors do not properly clinically record their situation, how could the numbers game they are hoping to play ever be useful? We know from the patients themselves and their families that these cases are incompletely recorded, so we cant get statistical power that way. The disease is too rare, and our last suicide - amongst many others - was not clinically recorded.
As Prof Irwig mentioned in his paper, a disease of this rarity reaching signal in a placebo controlled trial would require a trial of a scale and duration that could never be achieved. A rarity in predisposition in line with a well-recognised genetic andrologic disease - say above one in 350,000 - wouldn’t make three cases in a million consumers. We know PFS is more frequent than that, but it is still extremely rare.
Therefore, when the clinical experience of our patients is to generally be entirely dismissed (180 surveyed reveals extreme dissatisfaction denoting a dangerous situation per Short Assessment of Patient Satisfaction), what on earth are we meant to do? Die quietly while a few urologists declare the numbers not very strong, carefully mentioning only the symptoms that aren’t undeniably physiological? It is absolutely risible in 2020. I truly wonder how they would feel if it were them, or their child, suffering this horrendous disease and they saw such indifference. Anyone outside of this sorry situation would hope such professionals to be there to protect and help young people who had their lives snatched away by clinical ignorance.
For those wondering why we bang on about numbers in the survey, here’s the reason. We need as strong data as we can get, especially given the inherent biases of purposive non-random sampling.
I should say however despite the disappointment of the usual handwaving, it’s very clear the situation is entirely different from how it was. There are some clinicians there with a clear awareness, concern, and even first hand experience. Very heartening.
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Absolutely, @Northern_Star. I’m always shaking my head at the vitriol I see on here from some patients towards youtubers who are saying PFS isn’t real or something, when so many of our own fellow patients dont understand the extent of symptoms in others and dismiss them in their wild theories etc. The situation is ostensibly implausible, and the true extent of it even moreso. People just default to what “makes sense” to them, because in many cases Occam’s razor applies. Not this one unfortunately.
As an aside, it’s amusing to see one of two tweet’s on Dr Khera’s accounts be some spam to free ray ban glasses…Hopefully not a sign…
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I think I may jump into this conversation later on as a test to see how these doctors react to us.
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Thought this was a pretty ignorant comment by Erika
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safe to say we’re in good hands
Yea his next tweet might read…
All u pfs people…Fuck your Noise…# heavyhitter
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Fuckin erika, man.
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This sounds like a great idea - maybe it’s even reasonable to post a link to our forum/point out that the EMA acknowledged persistent sexual dysfunction after ssri withdrawal which had been denied for years as well
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How many suicides are listed in this Forum from the beginning up to now. How many members Feeling devasted disapperad.
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In many other Internet Forums persistent ED of Finistarid is discussed without connected to pfs.
I think There are much more suicides as listed from the pfs foundation and official known. There just was a Report at a britisch newspapers. Is he counted?
@Exsexgod it took me 15 years to find the culprit by which time I was drowning in symptoms. There will be thousands of more sufferers who don’t know they have the disease, who don’t get picked up by doctors. God knows how many deaths. Suicides in men under 40 have never been higher. With 50m prescriptions per year it makes one wonder how many are because if this drug
And many young guys are to ashamed to inform their community or just to enter an anonymous Internet Forum, they live a sexless live in fatigue, or commit suicide, counted as depressed. Permanent ED not temporary ED ist the hardest punishment for a man, even 60 yo. But the young guys the entire sexlive, family and Kids and all the hedonic fun is stolen. Instead of making Party or meet with the Girls they lay down bedbound with fatigue, weak muscles and depressed. And Citralopram, Prozac, Fin, Accutane is still described to young guys.
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I’d agree. I tell everyone but that’s me at 33 I never mentioned my ED but didn’t know the cause and my friends would have took the piss. I still found women attractive it took years for that to fall away
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There must be one victim running Amok at Mecks Headquarter to Bring IT to TV and the Newspapers. And than thousands of Victims Outing themself. And Propetia, Accetuane, Prosac, Citralopram, older men with Finistarid are Not more a rare disease any more. Cynism Off!!
I don’t bei able to Join the Hormon driven normal live anymore. So I have to live as a Strange Zombie in my House, trying to survive in any way. Paying the Bills, doing the Household big Big Problem now! What a Future!
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