Where do you come from?
Im from germany
Brexanolone is just another fancy name for Allo
The problem is with aquiring Sage 217, which is orally bioavailabe, and an analogon of Allo.
I may have confused you, by stating that the study for Major depression was done using Allo, but in the fact it was Sage-217, wich is an analogon and much more expenisve to get
Thanks for joining the forum, as a doctor what do you specialize in???
Im a resident in the cardiology at a university hospital…Thx Merck for ruining my life and everything i have done to get here :(.
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Stay strong man, I’m fighting everyday myself with this horrid condition for a little over a year now. Have you told any of your colleagues about your condition?
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To be honest guys, i cant get why we dont just collect some money, and get someone of the most affected by PFS among us, try it.
I really have high hopes of SAGE 217, becuz i truly believe, that PFS is some sort of neurological problem.
I dont want to start suggesting theories, that i cant even prove, but the fact, that PSSD and PFS share a lot in common, and lead to the same symptoms, tells me, that it is some sort of Brain-issues. On the other hand i truly doubt that the Andorgen receptor is not working. Androgen receptor is very well studied, and it would have been easy to decipher our issues, if it was the problem.
I think, that the 5-alpha reductase in our brain have been compromised, and im not speaking of total DHT in our blood, that can come from different sources (Same as you can have 0 DHT and still lose hair, bcuz its the local production in the hair follicle that counts).
Its the local production of reduced Steroids, what makes us sick. When we are deprived from our neurosteroids, we end up in a devil cycle of compromised 5a-reductase (Which btw the rate limiting enzyme for Allo and co. production, and that makes me think, that it is far less synthesized in depressed patients), compromised Neurogenesis in the Hippocampus (And just for fun in the olfactory bulb, as i have lost my sense of smell completely for nearly 1,5) due to basically no more available Neurosteroids (Allo controls the neurogenesis in those areas, and without it, we get memory loss, depression, brain fog, you name it), and our body cant come out of it, becuz depression leads to reduced Neurosteroid production, and reduced neurosteroid leads to depression.
I know, some of you will bash me, becuz lots are suffering from physical changes, but again, normally depressed people have those changes too, let alone We, who are no only normally depressed, but really F* up, anxious, majorly depressed, cant sleep and so on.
If the changes in 5a-reductase is epigenetic, which i think, it is. (The expression of those enzymes are likely to be controlled through DNA mythelation), then we are truly F*, not becuz its not reversible, Epigenetic changes can be reversed, but only slowly. We are f* up, becuz noone will ever be able to study PFS in the next 60 years until enough of us have died, and our brains got examined. (Most of pfs sufferers are young, and this s* wont kill any sooner.
Its just my theory, and ofc i cant prove any of it, but to be honest, if there is little hope for us, it would be SAGE 217 in my opinion.
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Yes i told only those who i trust. Now i regret it. But at that time, i thought it would be the only way to stop me from suicide, having someone to know, what im up to, and stopping me from doing it.
I cant believe, how awful this drug is. Trust me, im in my 5th year of Resideny, and i have never expreinced anything like this.
What are your main symptoms btw.?
I still have sensitivity decrease all over my skin which fluctuate during the day (Mornings is the worst), ED, decrease penis sensitivity and 0 Libido…Sleep is only possible if i take mirtazapine, which put me to sleep for 6 hours tops.
I got hit very hard unfortunately, muscle wasting, dry skin, genital shrinkage,0 libido, ED, tinnitus and insomnia along with joint cracking and of course severe depression and anxiety, the anxiety has gotten better though. Also brain fog!
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Somehow im pretty optimistic about Sage-217. The good thing is, becuz depression is a major health concern (brings a lot of money is the right expression), it wont be long until Sage-217 is on the market. I hope i would be around till then. Otherwise im still convinced, that we as a community should all chime in, and try to get it now for someone to try it. I mean, all of us has spent thousands of dollars on fancy supplements, why not on something that may actually works?..I have already contacted a chinese company to see, if i can get them to synthesize it for us. It would be definitely cheaper than buying it from respected companies like Medchemexpress but still, even if it was 50% pure, it may make a difference in somebody"s life.
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I live in Europe quite close to you and am definitely very interested in trying Sage 217 or Ganaxolone. Of course, I worry about the possibility of being ripped off, especially by Chinese suppliers. Anyway, just thought I’d throw my hat into the ring.
What are your remaining symptoms btw.?
Low libido, genital anesthesia/a orgasm is, and anxiety/depression.
Any update on the foundation making progress in allowing a PFS patient to try Sage’s Allo drug(s)?
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I was thinking the same
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silentpain89, that’s really interesting.
Any updates on possible ALLO treatment?
Why do you regret it? Do medical doctors normally stigmatize colleagues who suspect they have unofficial side effects from medications? Just curious.