Xyrem-Not the Cure

[plzrecover]

So I was surprised that I got little feedback from the forum after my trial with Xyrem (aside from those of you who messaged me about it personally), and have felt for awhile that it’s sort of my duty to update everyone on my experiences in a formal thread (even though I have already talked about it in my member blog)

Long story short, Xyrem didn’t help me. It’s a hell of a drug to get ahold of, which I did LEGALLY (making it even more difficult as the shelf price of the drug is around $6000 a month. Finding insurance to cover treatment was complete hell, despite having evidence of virtually no deep sleep achieved in sleep studies.

I took the drug for a couple of months, scaling up the dose conservatively yet seeing no improvements in PFS symptoms. The drug also came with it’s own collection of side effects, mainly depression and anxiety, which I saw no need to experience since there was no change in PFS. I did, however, see a substantial increase in deep sleep on the drug when I went for another sleep study–at least it did what it’s supposed to do.

Anyway, I just felt it sort of my civic duty to let the forum know that the “all-mighty, PFS-killer Xyrem” is not the answer to PFS, or at least it wasn’t for me. I know a lot of people look toward the drug like it’s the Holy Grail (I sure as hell did after reading posts by ItHappens, etc), and I’m sorry to report that it wasn’t for me.

[PerfectGent]

@plzrecover

So I was surprised that I got little feedback from the forum after my trial with Xyrem (aside from those of you who messaged me about it personally), and have felt for awhile that it’s sort of my duty to update everyone on my experiences in a formal thread (even though I have already talked about it in my member blog)

Long story short, Xyrem didn’t help me. It’s a hell of a drug to get ahold of, which I did LEGALLY (making it even more difficult as the shelf price of the drug is around $6000 a month. Finding insurance to cover treatment was complete hell, despite having evidence of virtually no deep sleep achieved in sleep studies.

I took the drug for a couple of months, scaling up the dose conservatively yet seeing no improvements in PFS symptoms. The drug also came with it’s own collection of side effects, mainly depression and anxiety, which I saw no need to experience since there was no change in PFS. I did, however, see a substantial increase in deep sleep on the drug when I went for another sleep study–at least it did what it’s supposed to do.

Anyway, I just felt it sort of my civic duty to let the forum know that the “all-mighty, PFS-killer Xyrem” is not the answer to PFS, or at least it wasn’t for me. I know a lot of people look toward the drug like it’s the Holy Grail (I sure as hell did after reading posts by ItHappens, etc), and I’m sorry to report that it wasn’t for me.

Thanks for posting plzrecover, I was thinking about trying this too, but the obstacle in getting the script has deterred me. Your post makes me glad I didn’t go thru with it. I had to find a workaround in getting some antibiotics and that was a hassle, I can’t even imagine the hoops I’d have to jump through for Xyrem. Thanks bud, keeping fighting.

[moonman1]

Good stuff. Thanks for posting.

[jamielondon]

Another user here who had the same experience. Seroquel is a better sleep aid

[gefinauser]

Much, much appriciated plzrecover. I will also take Xyrem less seriously. Maybe there are other ways to increase deep sleep. If not already looking into it… try to get a hold of cortisol lowering supplements and serotonin/melatonin increasing supplements. L-tryptophan is great when taken as little as one or two sand particles, really just two crumbs. Phospatidylserine for sleep, I take it 3-4 pills (sunflower letichin version, you can find it from from iherb) along with 4-5 x 500mg Ox bile pills (Iherb stuff too) to ensure I absorb it. There are many more, eg 60mg zinc chelate at night too. You’ll make it man. Keep on looking.