Dont forget you could jump through hoops to get into the study and end up being a placebo
2 Likes
Just a question.
If Sage 217 does get released in the next year or so will it only be available for people who live in the US ?
It’ll have to get approved by the European Medicines Agency (EMA) to be prescribed in Europe. I think it is common for drugs to get approved by FDA and EMA around the same time, maybe within the next year in Europe. Zulresso is already approved by both agencies.
2 Likes
Also I think for people with PFS we would have to get this drug off label.
At least in the US, doctors can prescribe off-label but pharma companies can’t market off-label. Sage-217 should get approved for major depressive disorder as its first or second indication. It isn’t hard to get a DX for depression and many PFS patients have depression as consequence of their PFS so I don’t think getting a prescription should be a problem if you have insurance.
2 Likes
These people would rather suffer years than take ANYTHING to help that is not a 100 percent cure. Ive never seen people who are suffering so badly, but so closed minded on a treatment option! I would be so grateful for even a 10 percent improvement! Some members here only want an absolute cure or suffer thought hell. I just don’t understand that mentality.
1 Like
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.
4 Likes
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
4 Likes
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.
2 Likes
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.
3 Likes
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.
1 Like
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?
1 Like
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.
1 Like
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.
1 Like
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