Shown: posts 1 to 13 of 13. This is the beginning of the thread.
Posted by EscherDementian on September 9, 2003, at 16:34:21
i believe it was mentioned in one of the posts about the meds for ADD... (Utopizen?)
Thanx,
Escher
Posted by Ame Sans Vie on September 9, 2003, at 21:56:46
In reply to What is Xyrem?, posted by EscherDementian on September 9, 2003, at 16:34:21
It's GHB (gamma hydroxybutyrate), which you may remember was demonized in the media some time ago as a date-rape drug. It's a colorless and nearly tasteless (a bit salty) liquid that was slipped into the victims' drinks. A very small amount would render the person unconscious. (Note: don't confuse this with Rohypnol [roofies], the date-rape pill, which is a benzodiazepine)
GHB had been a Schedule I controlled substance in the U.S. (i.e. illegal, not available by prescription) for a while, and just last summer was approved by the FDA to treat narcoleptic cataplexy. This prescription form is now a Schedule III controlled substance (accepted medical use, but fairly high potential for abuse), though when distributed or used illegally, the offender will be prosecuted for possession/sale/intent to sell/whatever of a Schedule I controlled substance.
Orphan Medical, the manufacturer of Xyrem, is trying to avoid the stigma attached to the name "gamma hydroxybutyrate" by using a different generic name for its product -- sodium oxybate. Clever, huh? lol Anyway, here's their site for more info:
Posted by utopizen on September 10, 2003, at 1:29:21
In reply to Re: What is Xyrem? » EscherDementian, posted by Ame Sans Vie on September 9, 2003, at 21:56:46
> Orphan Medical, the manufacturer of Xyrem, is trying to avoid the stigma attached to the name "gamma hydroxybutyrate" by using a different generic name for its product -- sodium oxybate. Clever, huh? lol Anyway, here's their site for more info:
>
> http://www.xyrem.info
>I've only seen "GHB" used in abuse studies. Probably helps them get their funding, which is diverting real research into the drug into research on things we already know.
Sodium oxybate was the clinical term long before Xyrem came about. And I just got a FedEx overnight from them, and their literature consistently points out that it has been called "GHB" anyway.
They gave me studies on its use for Excessive Daytime Sleepiness. Of course, you have to ask them just to get it, because the FDA makes them only allowed to do this if you ask them first... but it's clear, through their new studies evaluating EDS as an endpoint result of Xyrem use, that their intent is to establish enough research to eventually get EDS indicated. FBS is very likely, if you read their statements on press releases.
Posted by Ame Sans Vie on September 10, 2003, at 5:25:33
In reply to Re: What is Xyrem?, posted by utopizen on September 10, 2003, at 1:29:21
Well I know I, for one, am eagerly awaiting FDA approval for fibromyalgia. It worked wonderfully for me during the three weeks that I took it, but the price *is* absolutely outrageous. At the moment, the only way I could get Medicaid to pay for Xyrem is if I were to somehow feign narcoleptic cataplexy, and I have the sneaking suspicion that most neurologists won't fall for that... I have my source of GBL though, which is doing the trick for now.
Posted by femlite on September 10, 2003, at 9:56:53
In reply to Re: What is Xyrem? » utopizen, posted by Ame Sans Vie on September 10, 2003, at 5:25:33
> Well I know I, for one, am eagerly awaiting FDA approval for fibromyalgia. It worked wonderfully for me during the three weeks that I took it, but the price *is* absolutely outrageous. At the moment, the only way I could get Medicaid to pay for Xyrem is if I were to somehow feign narcoleptic cataplexy, and I have the sneaking suspicion that most neurologists won't fall for that... I have my source of GBL though, which is doing the trick for now.
What is GBL? I also suffer from Fibro.
Posted by Ame Sans Vie on September 10, 2003, at 12:07:17
In reply to Re: What is Xyrem? » Ame Sans Vie, posted by femlite on September 10, 2003, at 9:56:53
GBL is gamma butyrolactone (some other common names include 4-butanolide, dihydro-2(3H)-furanone, 4-butyrolactone, butyrolactone gamma, butyrolactone, tetrahydro-2-furanone, and (2-(3H)-furanone dihydro). In the body, it is converted to GHB (gamma hydroxybutyrate). Because of the fact that one can drink GBL and achieve just about the same subjective effects as if they had taken GHB (which is a Schedule I controlled substance, unless prescribed by a doctor), GBL is *very* highly regulated in the U.S. and almost impossible to get unless you know of one of the very few places left on the internet from which you can order it... but I'm jumping to conclusions, sorry -- if you live outside the U.S., GBL (and another GHB precursor, 1,4-butanediol) may be perfectly legal. I believe that is the case in Canada.
GBL and 1,4-butanediol were sold as GHB alternatives for quite a while under such names as Renewtrient, Blue Nitro, Revivarant, Gamma G, and Serenity 2. Since the DEA crackdown, GBL is most often sold disguised as an organic solvent, cleaning product or *weight belt cleaner* -- lol... sounds funny, but these products were originally marketed toward bodybuilders as they increase excretion of growth hormone. Nevertheless, GBL actually *is* very effective for these purposes.
There are several chemicals somewhat similar to GHB/GBL/1,4-butanediol that are still legal for sale in the U.S. One is the product Tranquili-G, which contains 4-pentanolide (a.k.a. gamma valerolactone [GVL]); GVL can quite easily be converted into another legal GHB analog, gamma hydroxyvalerate (GHV) There's no real point to this though, as GVL becomes GHV in your body; just like GBL becomes GHB. Tranquili-G is actually a very good product for anxiety relief, insomnia, and, to a lesser extent, fibromyalgia. It's manufactured by Avant Labs:
http://www.bodybuilding.com/store/al/tran.html
I'd recommend giving it a shot -- it was moderately helpful for my fibro pain and helped for a limited time with my social anxiety. Just be forewarned that it tastes and smells like acetone-free nail polish remover, lol.
There's also a research chemical available known as gamma crotonolactone (GCL), but I've yet to find any information regarding its safety for human consumption, so of course I'm not going to take my chances.
Posted by utopizen on September 10, 2003, at 13:44:13
In reply to Re: What is Xyrem? » femlite, posted by Ame Sans Vie on September 10, 2003, at 12:07:17
For those of you not willing to risk your lives over a medicine, I suggest avoiding GLB at all costs-- including the cost of paying for Xyrem out-of-pocket.
My insurance will pay for Xyrem for anything, and many will. Some have to receive a request from the doctor, and generally it's just a matter of paperwork (sometimes involving "appeals"-- which just means re-submtiting the same thing until they're annoyed enough times they approve you!!)
No insurance has a fixed policy against covering anything. If your doctor sends them enough documentation and appeals, they'll eventually cave in.
And I got the packet from Ovation that they give for Physicians. It includes information for detecting cataplexy, and how to discern it from patients who feign it.
You don't need to wait for fibro to be approved by the FDA, I was on the phone with Xyrem for 1/2 hour talking nothing but off-label uses, much more obscure ones than fibro. The pharmacist says they get requests for medical info by doctors interested in novel applications all the time.
It may be a few hundred a week, but GLB-- that may be deadly.
Posted by femlite on September 10, 2003, at 14:07:25
In reply to Re: What is Xyrem? » femlite, posted by Ame Sans Vie on September 10, 2003, at 12:07:17
GBL is *very* highly regulated in the U.S. and almost impossible to get unless you know of one of the very few places left on the internet from which you can order it...
Can you elaborate on this point?:)
> I'd recommend giving it a shot -- it was moderately helpful for my fibro pain and helped for a limited time with my social anxiety. Just be forewarned that it tastes and smells like acetone-free nail polish remover, lol.
It sounds like from your experience GVL/GVH is not as or only moderately as helpful as GBL/GHB.Did I get that right?
Im not sure I can swallow something that smells like nail polish remover :(~
Does it taste as bad?Thanks for the link
Posted by Ame Sans Vie on September 10, 2003, at 14:12:04
In reply to Re: What is Xyrem?, posted by utopizen on September 10, 2003, at 13:44:13
> My insurance will pay for Xyrem for anything, and many will.
>
> No insurance has a fixed policy against covering anything. If your doctor sends them enough documentation and appeals, they'll eventually cave in.Not Medicaid. I've tried.
> You don't need to wait for fibro to be approved by the FDA, I was on the phone with Xyrem for 1/2 hour talking nothing but off-label uses, much more obscure ones than fibro. The pharmacist says they get requests for medical info by doctors interested in novel applications all the time.It's not that my doctor won't prescribe it off-label, it's that Medicaid won't cover it for an unapproved use and the Xyrem just isn't worth 80% of my SSI each month.
> It may be a few hundred a week, but GLB-- that may be deadly.Not at all. It is very rapidly metabolized to GHB in vivo. For all intents and purposes, GBL and GHB are one and the same.
http://193.51.164.11/htdocs/monographs/vol71/009-butyrolactone.html
Posted by Ame Sans Vie on September 10, 2003, at 14:18:37
In reply to Re: What is Xyrem? » Ame Sans Vie, posted by femlite on September 10, 2003, at 14:07:25
> GBL is *very* highly regulated in the U.S. and almost impossible to get unless you know of one of the very few places left on the internet from which you can order it...
>
> Can you elaborate on this point?:)lol, sorry, policy of the board -- it's illegal.
> > I'd recommend giving it a shot -- it was moderately helpful for my fibro pain and helped for a limited time with my social anxiety. Just be forewarned that it tastes and smells like acetone-free nail polish remover, lol.
>
>
> It sounds like from your experience GVL/GVH is not as or only moderately as helpful as GBL/GHB.
>
> Did I get that right?GBL/GHB are certainly much more effective... GVL isn't a horrible substitute though. I found it quite refreshing, and unlike GBL/GHB, I didn't need to wake up in the middle of the night to take a second dose.
> Im not sure I can swallow something that smells like nail polish remover :(~
> Does it taste as bad?Worse, lol. If you try it, mix it with about 2oz. of orange juice and just down it as fast as you can. That pretty much eliminates the taste... actually, it tastes kind of like a screwdriver. :-)
> Thanks for the link
No prob.
Posted by EscherDementian on September 10, 2003, at 16:51:10
In reply to Re: What is Xyrem? » femlite, posted by Ame Sans Vie on September 10, 2003, at 14:18:37
Thank you for the info, the link, and the exps.
Cannot find the post(article maybe) that inspired me to write it in my notepad with a "?", but getting answers on this board to suppliment previous methods of self education is streamline superior to the drudgery i was wading through before... Hats off, (or is that duct tape?)Forth Dementia,
Escher
Posted by femlite on September 10, 2003, at 19:26:59
In reply to Re: What is Xyrem? » femlite, posted by Ame Sans Vie on September 10, 2003, at 14:18:37
I heard much about the mood altering effect of both these substances.
Are they efficacious with regard to pain?
Posted by Ame Sans Vie on September 11, 2003, at 10:10:55
In reply to PAIN and GBL/GHB - GVL » Ame Sans Vie, posted by femlite on September 10, 2003, at 19:26:59
Yes, there are studies currently being conducted to establish Xyrem's efficacy in treating fibromyalgia. Anecdotal reports already have shown that it can be a true lifesaver. Xyrem allows fibro patients to reach the deepest stages of restorative sleep (something they don't normally do, which may be a cause of the symptoms). For this purpose, one only has to take it at night.
This is the end of the thread.
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