And all the while life passes them by while they could take something to help at least enjoy some of their years, like an antidepressant or whatever. They’ll take nothing, because they don’t want to further injure themselves (we are already broken, can’t get any worse!!) . They totally miss the point, there may likely never be a cure! Better cut your losses and take what you have to take, in order to have some form of quality of Life! or waste the years waiting for a cure.
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because they’ve seen people take a bunch of stuff and then kill themselves when it backfires.
“there may likely never be a cure”
and there may likely will be. either way whne u experiment on stuff your just playing russian roulette.
dont shame people for not playing that game.
its perfectly fine and ok to suffer through and wait until we get more information.
also, are you saying an antidepressent could help us possibly? smh
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It’s a shame the PFS Foundation can’t get some members setup with compassionate use access to this medication. There has to be a way since it could be extremely valuable in the arsenal against PFS.
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Please refrain from these type of postings. We won’t allow attempts to guilt trip people into trying dangerous treatments.
I also think that you are using a straw man. It’s not cure or nothing for “these people”. I am sure “these people” (whoever you mean) would gladly do treatments that reliably and safely provide symptomatic relief. But there aren’t (m)any. Desperately trying supplements or drugs on a vague hunch is dangerous and has made many people worse (and yes, for most people here it can get much worse!) with some ultimately committing suicide.
Finally, everyone has to make their own risk assessment. If you think you have nothing to loose and accept certain risks that’s fine. But it’s also a perfectly reasonable position not to risk what is left of one’s health and life for questionable treatments.
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If I may add my two cents, I think he is saying that there is a prevailing mentality or philosophy that if a treatment doesn’t offer “the cure” then it isn’t worth considering for your health management. In my earlier days, I personally used to think this way about treating PFS because I had not yet accepted that PFS was going to be a very long term ordeal that just doesn’t have a silver bullet cure right now.
Now rather than looking for “the cure”, I have accepted my circumstances, and I try to make the best of them by treating my symptoms since I’m not expecting to completely reverse my condition.
Putting a bandage on a wound is better than leaving the wound exposed, even if the wound is still there. For example, Viagra obviously doesn’t cure my PFS but if it can help a few guys manage to have some sex versus none, and in my opinion you should work that into your life. If you are really depressed from PFS, anti-depressants won’t cure you, but they may help make your life less painful. As we all know, anti-depressants carry their own risks, so that is a personal choice. But honestly, mental health is one of the most important things to fix.
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Does anyone have an idea or a realistic prediction about how much Sage 217 will cost? or if there’s any other drugs targeting similar mechanisms in development?
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Sage 217 (Zuranolone) will be the first in its class in pill form. Marinus was working on a similar drug, still might be, but they’re trailing.
We won’t know what it costs for awhile and even then it will depend on your insurance plan.
Thanks for the reply, I don’t have insurance as I live in the EU so I’m curious if it’ll eventually go generic, hopefully it won’t be too much for people to afford, otherwise it’ll be another drug for the rich I guess.
I don’t really know how it will work in the EU with nationalized health care, assuming your country has that. Drug patents last for 20 years in the US but hopefully there will be some way to get it.
The Marinus drug is called ganoxolone and they developed it before Sage but they’re behind in clinical trials because they’ve failed some of their tests for other conditions.
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As this drug seems to act on Allopregnanolone, I’m wondering if anyone has had tried 5a-dhp which also increases Allopregnanolone? Seems like there are at lease a few PFS guys having success with it over at the ray peat forum. Although I’m sure the mechanisms are much different, might be worth a try.
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ive tried that. its garbage.
ive read the threads where the dudes got some benefit with it. it all works for a bit, and then stops working.
sounds like placebo to me as well. i highly doubt some random website makes legit allo.
@lakehouse How do you know it just didn’t work for you? It seems a lot of things benefit some and not others.
I made this conclusion by tracking the progress of the people that took it.
Can’t remember 1 guy who said it kept working.
Prep on the other hand i think benefits some people and not others.
That 5-dhp however imo is junk, but go ahead and try if you want and let us know if it works
Guys how do we know this Sage drug can help us? Many other drugs just made us worse and worse. So why this one? I want to stay optimistic of course.
@lakehouse so you tracked them on every other forum and not just this one? Cuz it seemed like there were a more than a few people that had some success with it. I tried prep. Didn’t do jack except give me diarrhea.
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Yes I said “the people”. There were multiple on that place and another forum.
But go ahead and try it if you want, that’s just that conclusion I drew.
Prep didn’t work that well for me either, I was just using it as an example.
We don’t. It just a theory that replacing a neurosteroids we are low in will help us
People always think that somebody will gibe them the pill of the cure as easy as it sound.
Nobody will.
If you want to cure pfs, in my opinion, you have to try something on your own.
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Anyone know much about the timescales for getting a drug approved for UK markets? Zuranolone / Sage 217 doesn’t seem to be on the radar for UK.
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