The first Trial with SAGE-217

I experienced the pattern of brief sedation followed by improved libido then brief spurts of anxiety and heart racing when I took large doses of palmitoylethanolamide, a supplement and endogenous substance that increases allo via ppar-a gonism. Sleep maintenance was extremely difficult after dosing.

Remember that the entire premise behind finasterideā€”that some men have too much DHT so we have to take a drug to block itā€”is WRONG.

There are men with normal DHT levels who experience genetic male pattern baldness, and there are guys with higher DHT who donā€™t.

And according to my PFS doctor, there are plenty of patients who get normal levels of DHT when they take supplemental Testosteroneā€“but they still experience all the symptoms we know as PFS. And getting their serum Testosterone levels super high still does not make them feel better. I also know this from experience.

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Exactlyā€¦Its very complicated, and not very good understood, but its well established that Androgens, and DHT play a pivotal role in balding, so castrating someone would definitely prevent him from getting baldā€¦
As for supplementig with Testosteron or DHT, i really cant think of a way how anyone can get complete Androgen insensitivity that doesnt respond to high doses of T (Assuming the popular theory around here of Androgen recpetor malfunctioning)ā€¦Even with hardcore diabetes, giving more insulin (While having adverse effects) always lead to a better control of Glucose levels in blood, and FFS i know hardcore steroid users, that inject absurd amounts of those hormones, and bounce back every single time, or at least doesnt get the crash that every single one of us has gotten (Hands down shooting me in the head during the crash was the only humane thing to do to me)ā€¦The fact that i havent met anyoone who is on TRT, that still complains of common androgen deficiency symptoms like Beard not growing, or dry eyes, or pubic hair problems, leaves the theory of androgen receptor not functioning as very easily disputable (Assuming we take as well the harvard study into consideration, that has ruled out peripheral androgen deficiency)ā€¦The fact, that this disease is hard to unerstand, always gets me to think, that it originates from the brain, since its the only organ that we cannot access, at least not before someone dying, and as we are all young, it would take Ages, till we get the first study on PFS brainsā€¦Thats why, te PFS foundation HAVE to invest money into finding an animal model of PFSā€¦Its the only way

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What do you mean? What has the Harvard study found?

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If Allo is messed up thatā€™s an early death sentence for Pfsers. This is a ticking time bomb, a one way ticket to brain disease.

ā€œRecent data point to important roles for ALLO in different neurodegenerative disorders, including Alzheimerā€™s disease, Parkinsonā€™s disease, and multiple sclerosis (MS).ā€

Whoa whoa @Andrew35 - science does not fully know what causes Alzheimers, and many drugs developed to treat it have failed, so you cannot jump to such a triggering potentially harmful post with words like ā€œearly dā€¦ā€
It may be true that diseases of the brain affect neurosteroid synthesis. But we do not have enough tested and accepted scientific evidence about all this and how it works.

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They fail because they canā€™t get deep enough into the brain to treat the condition. Besides itā€™s irrelevant. Neurosteriods are there to protect the brain, take them away and whats left. Poor sleep, elevated stress etc. There will be higher incidents of brain diseases amongst PFSers for sure. This is an extremely serious condition. Even the milder cases arenā€™t safe. Not to be rude but you donā€™t need scientific data just use your common sense.

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Some PFS-ers have more sexual problems but not cognitive problems. Each person is affected differently. You are entitled to your own opinion, I just think it jumps to conclusions that can be triggering for people already suffering.

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Bro thereā€™s people killing themselves over PFS and this forum is turning into a graveyard. People need to fear the future and take action now while they have a chance.

To be honest, i find nothing wrong in knowing or telling patients, if they have terminal illnessā€¦Thats the only way to be humane, and to stop false hopesā€¦An example would be ppl who get a traumatic spinal cord injury, and have to sit in a wheel chair all their livesā€¦A friend of mine made that example for me once, that even those guy handle their illness way better than i do, and i was speechless, tilli i thought, well at least they know that there is no hope, its terminal DEAL WITH ITā€¦But in our case, we just f+cking DONT KNOWā€¦Will i ever recover, should i give it more time, is it terminal, and thats how my life would be till i dieā€¦That is the worst of the worst in this diseaseā€¦Its mental torture to put it in a very kind wayā€¦

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This is a wildly reckless statement to make, especially when so little is understood of neurosteroids in general. One study found a correlation between allo and neurodegenerative disorders but it doesnā€™t mean that this is reflective of PFS patients at all. We barely know anything about the role that neurosteroids play in PFS but there are some potential links based on about a dozen patients.

Iā€™m all for embracing reality but this is simply alarmist for little reason and it can be very distressing to people on here who are already feeling vulnerable and arenā€™t comfortable with the science.

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Part of learning to deal with PFS is learning to adopt a mindset that can handle the obstacles in life that PFS presents. Nobody knows if we will get better from PFS or we will be able to find a cure, but there is not necessarily any proof that it isnā€™t treatable or curable. You gotta accept this is the reality FOR NOW, live your life as if nothing will change, do the best you possibly can, and hopefully something works out at some point. There are no guarantees yet but you have to learn to control and manage what you can today and accept what you canā€™t. Too much pessimism isnā€™t helpful to anybody.

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Iā€™ve lived and survived with PFS for over a decade and at this point and I have learned how to live a better life today than I did when this ordeal first hit me. A huge part of surviving is finding the right attitude because if you look at life the wrong way, you are going to just constantly remind yourself of the bad and your health will get worse because PFS is heavily tied to the stress response mechanism.

Part of the reason that people commit suicide is because their stressors exceed their ability to cope. To some extent this is not controllable, but you can improve your coping mechanisms to make life manageable and improve your quality of life relatively speaking.

You donā€™t have to listen to these suggestions, but I will listen to yours because I have been putting off cleaning my apartment for too long. Thanks.

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@Frustrated Iā€™m struggling to understand how your post relates to guys who are at home dieing in their bedrooms from PFS and are housebound. David was one of those guys and he recently took his own life. When you are left in that position with no emotions, disconnected from realization and your only connection to the world is via a TV or computer how do you survive that? If you talk to these guys they led very active beautiful lives before PFS and thatā€™s all gone now. They are left with only memories and regrets of taking this poison.

There comes a point when a person loses their dignity and enough is enough. The guys who are liking your posts and effectively behaving like cheerleaders for your prose, are any of them bedbound and disabled from PFS? Before you write anymore paragraphs on being positive try doing something useful. Contact the worst affected, understand their pain and then see how a positive mindset can help.

I could easily sit here and write paragraphs and pages on positivity and relate it to experiences in my life, thatā€™s not difficult by any means. It gets the popular vote but easy is not the reality of the worst affected.

You clearly think a lot of yourself and your opinions, no doubt encouraged by the few likes youā€™ve received. It seems your dignity and your ego are still intact. It might help if you explain what your life is like now, your personal circumstances so we can see what it is you have actually overcome.

A man standing on the edge of the battlefield does not have the same experience as the one in the middle swinging his sword and fighting for his life.

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This thread is about SAGE-217. Letā€™s keep it on topic.

Thank you

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Well said @Northern_Star its time to draw a line under this conversation and move on.

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@silentpain89 How is your clinical trial of SAGE217 on yourself going?

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I have decided to refrain myself from any announcment about my Trial, until at least 1 month from now has passedā€¦The reason why i made this decision is a private matterā€¦I promise i will make end of february a prolonged note, on everything about this trialā€¦Please be patientā€¦Thx all for your support

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Thank you for everything That you endure for your self and us brother.

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Has anyone else tried SAGE-217?