I dont know why you think i dont have neuro symptoms…
Depression, Complete skin anesthesia, reduced taste, and smell sensations, tinnitus, memory deficits, horrible insomnia.
Just becuz i cant say i have brain fog (since its a bit shady symptom), that doesnt mean, that i have no neuro symptoms
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Can you please link me to someone who got cured from Rifampicin?
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didnt see you had depression, and memory problems- sorry
regarding sleep, when i first asked you, you said this:
“P.S. Sleeping at night is not a problem since i take mirtazapin 30mg…As a child i always took a nap after noon even for 30min, and without i just feel awful, and tired the whole day, and this habit kept with me till PFS…Now i cant take naps anymore…It just doesnt work…And nothing has changed till now”
I couldnt tell if you had insomnia based off that, because you never specified if you had been taking the mirtazapin before pfs or not, but thats how i read it
and personally, i have no expertise, so it doesnt seem like the skin, smell etc are all purely neuro
im just clearing up my end- i had no malicious intent when i said you had no neuro sides, i just misunderstood
I dont really think that you had any bad intentions…That didnt even cross my mind…
I just wanted to make clear, that I tried SAGE-217, and it didnt even make me feel better, but worse…Im not saying that it wont work for someone who doesnt have milder symptoms, but i really doubt it…
Trust me dude, im a very bad case, otherwise i wont even think of taking some research chemical…Im fighting for my life
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Fair enough
Thanks for the trial
n=1.
In other words, what you did to yourself was not a controlled professional level clinical trial.
We only know what you are telling us and even that means trusting someone we only know through a screen–I am not saying that you are wrong or what you went through is false.
But we cannot jump to any conclusions about SAGE-217 based on you.
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I believe what silentpain89 is saying is true but hes only one person.
For all we know the treatment might work for 99 out of a 100 PFS patients but he was one of the unlucky ones that the treatment didn’t work for.
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Please never give up. Be a testament to what sheer will can accomplish. You haven’t exhausted all options. It’s impossible to. There is always something new that could come out of nowhere. The whole CPAC just got Covidfefe’d. There is no more righteous indignation than to see yourself outlive these fucking ghouls, the worst scum of the earth, most of whom are accountable to our suffering.
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People always want to tell themselves that the best thing to do is sit and not do anything because once Baylor comes out, Sage comes out, other people get more people to fill out surveys, other people do any number of things, then they will be cured. This is precisely why the next 10 years will be the same as the last. No one here except the admins is DOING anything. People thought Sage would be the cure because thinking that gave them an excuse to sit, complain, talk conspiracy theories about drug companies, and not DO anything.
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I don’t think this is the right approach even if I perfectly understand the pessimism. Still there are people recovering after years and there’s proof of it on this very board
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Why don’t you go around to acne and ssri communities and let them know about our survey, get them to fill it out? Sexual dysfunction communities as well, to let them know their problem might be because of a drug and that a cure will be worked on if anyone will actually fill out the survey.
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I really like it when people come to conclusions after the experiment is over, and the results already have been published…
Who told me, that SAGE 217 would work? Well noone, i just made an assumption and acted on it, instead of hiding, and watching till others try it (If at all, since i really doubt that it would make it to the market)
You are opening a foundation…Well i dont want to sound condescending, but didnt we have one as far as i know?
Imagining i have this for life is nice way to accept it, and live with it, but this is the most coward thing i would have ever done in my life. One lives only once, and it doenst matter how long you live…What matter is what you have achieved, how i live is to me 100000% more important than how long i live.
Again im not trying to attack you, but trying to offend me and trying to suggest such a coward thing is just really upsetting
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Nobody said Sage is the way out from PFS but it was reasonable to think that it may help at the very least. Melcangi showed that PFS patients have undetectable levels of allopregnanolone in their CSF and SAGE-217 is an analog to just that. Allo is not the only chemical disrupted by finasteride but I think it made sense to try.
This guy took a big risk by experimenting with this and we benefited from his courage. He’s only one data point, but he had the balls to do something that unknown risks and I certainly wouldn’t have done it. You should be grateful he did something that gives you valuable information rather than criticizing him after it didn’t turn out well for him.
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Just to be clear my comment was aimed at those criticising your trial. I believe you had the right drug and it didn’t work. I think you’re extremely brave for trying this and I love your “fightin for life” attitude. Everyones attitude towards the result just made me uncomfortable and I didn’t like it. I thought airforlifes comment was based around these comments aswell but I guess it wasn’t.
I assumed before the trial the best this drug could do was mask a few symptoms and that this is what you were after not a magic bullet. I wasn’t saying I knew all along what the results would be.
Much love, keep hanging on. You’re an inspiration.
We need as many people as possible willing to do anything it takes!
x
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Why not just work with the existing Post Finasteride Syndrome Foundation?
Fragmenting things, and everyone on the same side but working against each other is such a 'Murica thing.
What about brexanolone given to post partum depression women? Isn’t it the same substance as SAGE217?
My understanding is that its the same molecule but administered by IV over 48 or 72 hours straight. It costs tens of thousands of dollars, we wouldn’t know what to do about dosing, and I’m not sure we could even get it prescribed.
SAGE-217 comes in a pill but it failed phase-3 trials for depression because a few people in the test group didn’t even bother to take the drug. They’re trying it for other indications and may be able to redo it for depression so there’s still a reasonable chance it’ll get passed for something but it pushes things back quite awhile.
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My PFS doc has tried the pill form of oral progesterone which is given to women, and he says that it does not work for me. Wondering if this is analogous to the pill form of allopregnanolone/brexanalone, aka SAGE217.
**Maybe this neurosteroid needs to be given by IV to get past the blood brain barrier!
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I think the IV version cost $30,000 and that doesn’t include the hospital stay. But I agree the IV might have a better effect.
I don’t know if anybody has asked Melcangi about this but it makes sense that it could help. It’s the one biochemical that has been consistently shown to be depleted among all PFS patients that have been tested, even if its a small sample. If that doesn’t make sense to try, then it doesn’t make sense for anybody to try any other treatment.
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