Thanks for all this information. Do you think it will be possible for some of us to try Zulresso this December in order to preview the potential effect of Sage-217? I would do almost anything to obtain some possibility of relief of my current situation. In my case, the sexual disfunction (and concomitant elimination of ability to have intimate relationships or children) is the real killer. I can live with being depressed in itself, but the prospect of having to stand by and watch myself become too old to start a family (may already be the case), isolated, and purposeless, is unbearable. I guess what I am trying to say is that I suspect for many of us the situation feels quite urgent, with time running out, and I wonder what means might be available for people to go ahead and try possible new treatments early. Thanks again for keeping on top of things the way you have and sharing your knowledge.
No problem vkg1.
I understand the frustration. I’m not sure if this helps, but there have been several guys on this forum that went on to have functioning relationships and children despite the challenges.
Zulresso’s is only approved for postpartum depression and not for major depression. Very unlikely that you would get a prescription. Furthermore, it has to be delivered through an IV for 60 hours straight where, for the most part, will be administered in a hospital. Couple this that even if you were to somehow get this prescribed off-label, you’re not getting any insurance coverage. All of this make it very difficult, if not impossible to get a prescription, but also very cost prohibitive as well.
Unfortunately, the closest thing is sage-217. Two years may seem like a eternity but that day will come.
I know you didn’t ask for it, but I wanted to give some personal advice that I wish someone had told me back in 2016, when I got for PFS. Disclaimer that this is my own opinion:
a) limit your time/visits to the forums - the cure isn’t buried here. It’s useful to get periodic updates on say, trials, once every 3-4 months. I like to come by to post on study related matters when they are released or answer questions if they’re directed to me. But try not to do more than that or you’ll obsess over this condition which will do you no good. In fact, as helpful as this community can be, I think it’s a destructive habit if you visit often. From experience, a lot of nonsense gets posted about this tea extract being a cure or crap theories about viruses. It’s complete crap and you’ll drive yourself nuts trying to read it.
b) Develop a few hobbies: Again, I can understand the frustration that you may not be getting joy/satisfaction from doing these, but they’re a great time passer and this is what you need right now. For me, it’s weight training, squash, and golf (weather pending). I’ve even joined a couple leagues to make sure i’m getting regular exposure even when I’m not feeling up to it.
c) Keep working on your career/school: You’ll want to give up on this since you have no motivation or passion, I get there and still experience that. Despite that, there’s two benefits for sticking to it. One, it’s a great time passer in itself and makes those Monday-Fridays melt away. Two, for me, I’ve been very frugal since I don’t spend money on “fun” things since I don’t enjoy things. By doing this, I’ve saved considerable money that I do plan to enjoy when the time comes.
I hope you found this helpful.
Yes I agree with you that doing much more than checking in on the state of the science is generally counterproductive and that it’s best to concentrate oneself into the other areas of life. But with treatments very possibly finally on the horizon, there will be a stage where it’s time to switch gears and really try to pursue resolution. Thanks for all your advice. My personal worry is just that I don’t have those 2-3 years left of “fertility window”. Out of curiosity, do you understand how the Zulresso is supposed to work? I thought the idea was that it would effectively replace missing Allopregnenolone. How could receiving replacement Allopregnenolone for 60 hours have long-term effects?
Out of curiosity is there any way to get Sage 217 medication or something that acts very similar right now? Legally or not, I’m just curious is there a way out there? I’d be very interested to try something along those lines and see what happens.
do we think that sage 217 can affect sexual symptoms? thanks
I don’t know about you guys call me dumb but wouldn’t it be nice if things were explained much simpler when we read these studies alot of the terminology is somewhat alien to me.
I know how you feel mate, your not dumb at all, your just new to this stuff and that’s perfectly normal. When I first learned about all this a couple of months ago I hadn’t a clue about anything scientific, I barely knew what genes did lol I was that bad with this stuff, never heard of the word epigenetic or methylation before this, but I got interested in reading more about different things and it makes a lot of sense now, I think you’ll definitely pick it up over time but at first it’s definitely very overwhelming if your not into science or biology which I wasn’t initially.
What helped me out was reading the conclusion part of the study’s that people publish, it gave me a short summary and was easier to pick up the terminology and get a gist of what they where discussing.
There is A similar drug called Ganaxolone that can be purchased as a research chemical.
Solvepfs had a discussion about it but I don’t think anyone tried it.
http://solvepfs.com/viewtopic.php?f=6&t=2379&p=35791&hilit=Sage+217#p35791
Anyone tried the above, very curious to see if this has an effect
Thanks for the response Mark, i actually came across that drug myself last night by accident too, just googling about, purchasing research versions of it is way to expensive though, like 99 quid for 10mg or something. Wish it was normal price, I’d give it a shot if it was.
I think it works the same as sage, gaba receptors or something raising allopreg.
Very excited about these new drugs, not for a cure but in general, it’ll be good to have drugs with potentially no or very little side effects, the opposite of SSRI’s basically.
It’ll be a handy bandaid fix for depression and mood (anhedonia) hopefully until the root of the disease can be targeted.
What makes you think that’s expensive? Do you know what the dosage we would want to try is? Perhaps ironically, you can buy it from SigmaAldrich which is owned by Merck.
10mg is basically nothing and is very expensive, sure sage was costing about 5000 quid or so for a couple of mg, it’s just because it’s not meant for consumers yet. I’d presume you’d need a lot more than 10mg lol if you’d take it every day.
https://www.tocris.com/products/ganaxolone_2531
First thing I googled, it’s more than 99 quid anyhow, I wouldn’t trust random sites for drugs in all honesty but if you can afford it, I guess it’s be worth a shot, but as I said to me, that’s extremely expensive.
Would love to see if this has some effect.
Regarding studies, is ANYONE in contact with this man? Phone number and email are on the site. At least to get a hint or idea about underlying cause, updated hypothesis, or even just when the Baylor study may come out?
Hi @Scott.H - yes. @awor was deeply involved in designing the protocol and is in contact. As he has posted although it’s frustrating for patients to be told to wait, they have a lot of data to analyse and nothing can be shared before publication. We’ll explain the findings and their relevance to the bigger picture when it’s published.
Are you able to provide any more current estimate on when publication will take place?
Vkg1,
I know you’ll disagree with me right now but you’re not “running out of time”. If you’re 28 going 30 or 48 going on 50, people find love/get into a relationship later in life. My grandmother remarried at 80 and they were together until she passed away at the ripe age of 102. If you want to think of it from another angle, use these next two years to become a better version of yourself (become more athletic, advance your career, learn a few skills, etc.) and you’ll be a better prospect than your current, 2 year younger version of you :).
I won’t pretend to be a scientist here, but Zulresso does exactly that. It’s an allopregnanolone analog and thus acts as enhancing the amount of allopregnanolone in your brain, CNS, serum, etc. It works for postpartum women because when some women give birth they have a huge decrease in allo (temporarily) and recover those levels slowly. Those weeks or potentially months where they are depressed is when allo is lower, but ultimately recover. The IV is supposed to keep allo levels high enough so that it stays high enough for women to then recover their own allo levels naturally. Unlike us, our 5ar is downregulated, so my hypothesis is that we would likely need a chronic dose of allopregnanolone (i.e. oral dosage of sage-217). I don’t know that for sure.
There were a couple of other questions asked in this thread, so I’ll give my two cents on that as well:
(a) “Out of curiosity is there any way to get Sage 217 medication or something that acts very similar right now? Legally or not, I’m just curious is there a way out there?”
Practically, no. There is a research compound called ganaxolone (as mentioned above); however, the cost is very prohibitive for a therapeutic and only accessible as a research compound. Marinus Pharma are the ones researching the compound for a few indications but their release date (if ever approved) would be a few years later than sage-217.
(b) “do we think that sage 217 can affect sexual symptoms? thanks”
No one knows for sure but here’s my own hypothesis: If we are not able to process emotions correctly (i.e. hippocampus is inflamed due to very low allo, no cross-talk between hippocampus and amydgala), we are not able to get aroused which lies a lot of sexual issues from a mental point of view. If we can target some of that, perhaps we can partially relieve some of these symptoms. No one knows though and we’ll just have to wait and see!
Considering what they’re doing I’d imagine the time frame awor gave in his update post (I think that suggested sometime in the next 7 months). I do know how heartbreaking it is to be cut off from a romantic relationship in the various ways PFS does that but I think @bfly73’s anecdote about his grandmother is heartening 
I know I keep saying it (and will) but it’s very important everyone takes part in the survey when it’s ready.
Hi guys
Ive read your posts about romantic relationships and as I have had these thoughts in the past I thought I would pipe up and tell you my thoughts.
I was initially castrated by finasteride just a month i was splitting up with a long term partner and mother to my oldest daughter this sexual issue just made the whole problem worse and was part of the reason for the breakup to some point as I wasn’t active in the bedroom and being on a rocky road already led to one or minor arguments but with my sexual situation not being explained to the misses when there was no make up sex she would take it that i was holding a grudge. When we did breakup it was a nightmare roller coaster of emotional trauma which continued for month down the road but when things had settled down I started to look around for a new relationship my ex was already in one which kind of gave me the all clear.
It was at this point I realized that I hadn’t missed sex hadn’t had an errection masturbated or even thought about it then i summed it all up and thought hey im not even thinking about sex im actually looking for companionship from a new relationship sex hasn’t even crossed my mind for months but i attributed this due to not only the emotions i had been through but also the testicular pains i had been getting every day, it’s amazing how you ignore physical pain when your in red emotional pain . At this point the penny dropped i had been getting these pains since taking finasteride prior to the family breakup I had investigated these pains week one of finasteride and read that they would go away once my body had adjusted and my suffering sex life would go back to normal again once the adjustment had completed. This is when I realized just how long I had been in this pain and now single I really did not want to lose my hair so continued taking finastetide as i was using testosterone for pain management and the finasteride was to combat hairloss.
I thought i best check things out physically here if you know what I’m saying 
… This did not go to plan I couldn’t get it up no matter what I thought it wasn’t happening I then arranged a night out we friends to get out on the town thinking maybe if im with a woman all will be different. Sure enough a couple of weeks later i was out on the town and getting physical with chicks on the town you bit of a flirt and a kiss bla bla but still not feeling any excitement which was strange i did get a ladies number so thought i would pursue via texts and calling to make arrangements for some time together. Knowing that I still didn’t feel anything downstairs i decided to buy some viagra as a backup and boy was i glad i did when the time come as my dick was just numb and felt cold it was mind bending i knew i had no choice but to get that Viagra down the hatch which i did and thank god it sorted things out . Problem is im still in this situation 14 years later yes it’s been a mind bender you bet but ive learnt to accept it work around it and live with it. Ive made it work ive had sex with different women ive had a few short relationships and a couple of long term relationships too . I will admit ive had a couple of women that have looked at me a little strange as we have been in bed together and nothing has happened sexually one of them had this experience twice lol 
you have to laugh or
you cry the only reason this happened is sometimes i just want to put up with the banging headaches from viagra so i think bugger im going sleep lol . Moral of the story is you can get out their you form a relationship you can fall in love I have an amazing partner and we have a young child together. Please guys don’t let finasteride side effects totally ruin you’re lives your still a man your still capable of loving and caring for someone… And your possibly capable of having sex using viagra and if it works try not to think less of yourself try to stay positive and look on the bright side.
All the best
Thanks guys for all the feedback. I do agree with what all of you say. However, although its psychological effects can be mitigated with the right mindset, nonetheless there is a real finitude to our sexual/reproductive lives and missing out on them is tragic. One might say that the purpose of life is to reproduce. Women typically target having children in their 20s, at least in my country, where women place highest priority on family and the health of their children. I’ll soon be 50% older than the oldest women having children in my country. Certainly I can find a woman anyway, but desperation and needing to settle way below what one’d always hoped for are not the greatest initial conditions for healthy relationships. Anyway, I don’t mean to depress. Just thought I’d express the opinion that, although the right approach can minimize the effects that this syndrome will have on our reproductive lives, time is very much of the essence. We can’t change the biological truth of the finitude of our reproductive lives. Men are fertile into advanced age but women are not.
Just thought I would mention that I have read PTSD also causes sexual dysfunction and has been connected to low Allopregnenolone levels. Maybe that supports the idea that Sage 217 will helpful both for depression and sexual dysfunction.