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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by Michael Bell on November 26, 2010, at 18:22:22
Point blank, it is the single most effective med I've ever tried with respect to its action on social phobia, hands down. I'm not talking about anxiety relief, which many drugs provide. I'm talking about its prosocial nature. And I've taken the heavy hitters, like klonopin, Nardil, SSRIs and Dexedrine. Mind you I only take it at night for narcolepsy so I can only guage the hour or so before I go to sleep, but with respect to late night phonecalls with friends and family or conversations with my wife, it is like nothing else. You don't feel pressured to talk. You WANT to talk. And talking comes easily.
The downsides: It has a very short halflife, and is extremely dose sensitive. A ten percent difference in dosage means a difference between being social and being absolutely ready to sleep. Plus tolerance probably builds, but it is hard to really say for sure.
If they could make an extended release version and figure out a way to minimize tolerance (such as NMDA antagonists for stimulants) then it would be a powerful tool for social, phobia, if it were approved for that purpose.
I feel strongly enough about this that I would sign a petition along with thousands of other SP sufferers to send it to Jazz Pharmaceuticals and the FDA to pressure investigational studies into its applicability for SP.
Posted by Phillipa on November 26, 2010, at 18:53:54
In reply to XYREM for social phobia - my review, posted by Michael Bell on November 26, 2010, at 18:22:22
Micheal great that you found a med. Extended release you feel would also handle anxiety? Phillipa
Posted by ed_uk2010 on November 28, 2010, at 7:27:43
In reply to XYREM for social phobia - my review, posted by Michael Bell on November 26, 2010, at 18:22:22
>I feel strongly enough about this that I would sign a petition along with thousands of other SP sufferers to send it to Jazz Pharmaceuticals and the FDA to pressure investigational studies into its applicability for SP.
I think 'thousands of others' is the problem. I can't imagine that the FDA would ever approve GHB for the treatment of a common condition. They will not want GHB to become widely distributed in the community.
Posted by sigismund on November 28, 2010, at 16:31:45
In reply to Re: XYREM for social phobia - my review, posted by ed_uk2010 on November 28, 2010, at 7:27:43
Yeah, that's what my doctor said.....
'You can't have people wanting to talk to each other and having sex'.
Posted by ed_uk2010 on November 28, 2010, at 17:04:59
In reply to Re: XYREM for social phobia - my review » ed_uk2010, posted by sigismund on November 28, 2010, at 16:31:45
> Yeah, that's what my doctor said.....
>
> 'You can't have people wanting to talk to each other and having sex'.I think we have to be realistic. Jazz pharma tried to get Xyrem (GHB) approved for fibromyalgia in the US. The application was rejected. Although Jazz were able to present some evidence of efficacy, the FDA were unwilling to approve Xyrem for such a common condition. Approval would open the door for a huge number of patients to be prescribed Xyrem, and Jazz pharma didn't have enough evidence that Xyrem is sufficiently safe to be used so widely.
Posted by ed_uk2010 on November 28, 2010, at 17:19:32
In reply to XYREM for social phobia - my review, posted by Michael Bell on November 26, 2010, at 18:22:22
Hi M
Please don't take this as a criticism, but there are numerous problems here!
>Mind you I only take it at night for narcolepsy so I can only guage the hour or so before I go to sleep, but with respect to late night phonecalls with friends and family or conversations with my wife, it is like nothing else.
...but the majority of social phobia symptoms occur during the day. It wouldn't be possible to use GHB at school or at work, especially if driving.
>The downsides: It has a very short half life, and is extremely dose sensitive. A ten percent difference in dosage means a difference between being social and being absolutely ready to sleep....and there are differences in response between patients, and in the same patient at different times. How would it be possible for GHB to be used therapeutically for an anxiety disorder?
>If they could make an extended release version....
For a liquid medicine with a dosage measured in grams (not milligrams), none of the usual ways of creating a modified release product would be possible. It would be like trying to make sustained release alcohol.
>I feel strongly enough about this that I would sign a petition along with thousands of other SP sufferers to send it to Jazz Pharmaceuticals and the FDA to pressure investigational studies into its applicability for SP.
Jazz pharma would love Xyrem to be approved for a common condition. Given the ridiculous price and lack of competition, it would be highly profitable. The thing is, Jazz are not going to perform expensive research into a condition which you can be pretty certain the FDA would never approve Xyrem for.
Posted by Michael Bell on November 30, 2010, at 17:19:17
In reply to Re: XYREM for social phobia - my review, posted by ed_uk2010 on November 28, 2010, at 17:19:32
Those are all good points that you make. It's one of those bittersweet type of things. On the one hand, there is a substance out there that addresses both the anxiety and lack of prosociability aspects of SP. On the other hand, there are obvious shortcomings with it, both legally and chemically. However, I wish more people in the medical community were AWARE of how good Xyrem is for SP, even if only acutely. This awareness could be a springboard for investigating why it is so effective, even if Xyrem itself is never indicated for that purpose.
Posted by ed_uk2010 on December 1, 2010, at 11:34:21
In reply to Re: XYREM for social phobia - my review » ed_uk2010, posted by Michael Bell on November 30, 2010, at 17:19:17
>This awareness could be a springboard for investigating why it is so effective, even if Xyrem itself is never indicated for that purpose.
True. I suppose they could prescribe it off-label, but I think that would be unlikely. Anyway, anything is possible in America.
This is the end of the thread.
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