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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 6 of 6. This is the beginning of the thread.
Posted by Michael Bell on June 20, 2004, at 6:07:17
Apparently an xr form of xyrem is being formulated and may be tested as early as late 2004. Seems to me that this is the first step in perhaps broadening the indicated use beyond just severe narcolepsy and perhaps making it more available as an antianxiety agent.
Posted by utopizen on June 21, 2004, at 18:03:17
In reply to extended release xyrem, posted by Michael Bell on June 20, 2004, at 6:07:17
> Apparently an xr form of xyrem is being formulated and may be tested as early as late 2004. Seems to me that this is the first step in perhaps broadening the indicated use beyond just severe narcolepsy and perhaps making it more available as an antianxiety agent.
>
Antianxiety? Ha! It's got a terrible degree of AM anxiety, and if you're like me, and actually had to deal with this pathetic excuse of a drug, you'd know that existing anxiety disorders likely predicts that you will have incredibly intense anxiety for several hours, despite that no metabolites are in your system when you wake up.
And taking it during the day? It's safer to take a drink of alcohol during the day, and that's not to say much. I'd advise you start a hypothesis going for some hard drug to take during the day, like an opiate. Hearing loss from an opiate is nothing compared to the crap I had to experience on Xyrem.
And at least I realized ahead of time the degree of likeliness that I would get AM anxiety if I took the stuff, so I don't know why someone with an anxiety disorder like I had (social) would think this would help them-- you're likely going to get a terrible case of AM anxiety if you take it. If you take it during the day, expect all-day anxiety!
Find a drug that controls your social anxiety, and has you talking less. I don't hang out with people who talk their heads off to me, do you? Think about the qualities you look for in a person before becoming friends with them, and it's probably someone who asks you lots of questions-- not someone who talks their head off to you.
By the way, Xyrem is going to be extended release because waking up half way in the middle of the night is annoying as hell, not because a drug that's basically contraindicated in patients with an anxiety disorder is going to ever be approved for anxiety disorders.
Look up social lability and AM anxiety. I think it's likely around 10% or so, maybe higher. But you're likely going to get it, since you have an exisiting anxiety disorder. Don't think the fact that you can't get it should be a let down. You don't want it, trust me. I use to think this way, until I went on it with my doc for my sleepiness. I regret ever taking it.
It causes social lability and depression, especially for me, since I have social anxiety. And social lability is a terrible thing, because even if you don't get depression, you act like you do around others.
By the way, it's safe to say XR Xyrem will never be approved or prescribed by a doc who knows what they're doing. The FDA was pitched Xyrem for approval in sleep disorders because the Xyrem docs compared it to alcohol-- it's okay to take it before nighttime, but take it during the day and you start to see extreme cases of withdrawl, seizures that can be fatal...
Posted by jerrympls on June 24, 2004, at 19:56:09
In reply to Re: extended release xyrem, posted by utopizen on June 21, 2004, at 18:03:17
....some doctors call benzos "alcohol in a pill" too. Xyrem may have unfortunately been a horrible med for you - but I've heard more positive than negative from other people on it and from research. Yes, it's a drug you must be VERY careful while taking and can have bad side effects - but we're all different.
Just my 2 cents. Not meant to demean your experience or opinions....
Jerry :-)
Posted by utopizen on June 24, 2004, at 23:51:16
In reply to Re: extended release xyrem » utopizen, posted by jerrympls on June 24, 2004, at 19:56:09
You must realize, however, that, um, that's a false analogy. Just because docs refer to "alcohol in a pill" for benzos doesn't make it alcohol in a pill. Even Xanax can't be compared that well to daytime, repeated administration of alcohol or GHB.
With GHB, We're talking about something that peaks in 5 minutes, leaves the body entirely by the 4th hour, and thus has a half-life of 30 minutes. 30 Minutes. Xanax does not have a half-life in 30 minutes. GHB does. end of story.
Moreover, you are more prone to injuries when you are injured. If you have a disorder before you take a drug that's known to cause that disorder to a lot of people... well, that's like breaking your arm, walking to the store to by a baseball bat, handing it over to a large bouncer outside a bar, and then asking him to try it out on you after you repeatedly insult him.
Makes sense, right?
Anyway, trust me, thank god people aren't getting this prescribed in the daytime. It's like a guaranteed case of tardive dyskinsia, a severe motor disorder that leaves you with wailing arms uncontrollably for a lifetime, even after discontinuing the drug that causes it. To me, no one has social anxiety so bad they're willing to risk that. Mostly because you might feel a little akward doing that everyday, walking around without control of your wailing arms.
If you are comfortable with wailing your arms, more power to you.
> ....some doctors call benzos "alcohol in a pill" too. Xyrem may have unfortunately been a horrible med for you - but I've heard more positive than negative from other people on it and from research. Yes, it's a drug you must be VERY careful while taking and can have bad side effects - but we're all different.
>
> Just my 2 cents. Not meant to demean your experience or opinions....
>
> Jerry :-)
Posted by jerrympls on June 25, 2004, at 1:34:53
In reply to Re: extended release xyrem, posted by utopizen on June 24, 2004, at 23:51:16
> You must realize, however, that, um, that's a false analogy. Just because docs refer to "alcohol in a pill" for benzos doesn't make it alcohol in a pill. Even Xanax can't be compared that well to daytime, repeated administration of alcohol or GHB.
>
> With GHB, We're talking about something that peaks in 5 minutes, leaves the body entirely by the 4th hour, and thus has a half-life of 30 minutes. 30 Minutes. Xanax does not have a half-life in 30 minutes. GHB does. end of story.
>
> Moreover, you are more prone to injuries when you are injured. If you have a disorder before you take a drug that's known to cause that disorder to a lot of people... well, that's like breaking your arm, walking to the store to by a baseball bat, handing it over to a large bouncer outside a bar, and then asking him to try it out on you after you repeatedly insult him.
>
> Makes sense, right?
>
> Anyway, trust me, thank god people aren't getting this prescribed in the daytime. It's like a guaranteed case of tardive dyskinsia, a severe motor disorder that leaves you with wailing arms uncontrollably for a lifetime, even after discontinuing the drug that causes it. To me, no one has social anxiety so bad they're willing to risk that. Mostly because you might feel a little akward doing that everyday, walking around without control of your wailing arms.
>
> If you are comfortable with wailing your arms, more power to you.
>
> > ....some doctors call benzos "alcohol in a pill" too. Xyrem may have unfortunately been a horrible med for you - but I've heard more positive than negative from other people on it and from research. Yes, it's a drug you must be VERY careful while taking and can have bad side effects - but we're all different.
> >
> > Just my 2 cents. Not meant to demean your experience or opinions....
> >
> > Jerry :-)
>When I said "and doctors call benzos alcohol in a pill" I was on your side - not trying to contradict you. And I agree with you that it is NOT a daytime med.
It's so hard to convey a point of view through emails and posts because many times we misinterpret the message. I'm with you not against you.
Sorry if I offended you.
Posted by Anthony Quest on June 26, 2004, at 23:47:01
In reply to Re: extended release xyrem » utopizen, posted by jerrympls on June 25, 2004, at 1:34:53
(1) Few Things Are Intrinsically Evil
All the drugs you list have legitimate safe uses. Xanax while rarely the drug of choice for anyone, can be very effective and helpful for a lot of people. Because a drug can be misused or causes side effects is not a reason to ban it, but control it and ensure that the only those who truly need it have access, and only when closely monitored by a doctor.
(2) Xyrem is only approved for cataplexy
The FDA has approved Xyrem for cataplexy in patients with narcolepsy. Period. While physicians can prescribe off-label, if they want to prescribe Xyrem, they must register with the only pharmacy in the nation that dispenses it, patients have to be in a database, watch a safety video, and receive shipments via FedEx in person every month. The number of people who are receiving it off-label is extremely small and limited primarily if not exclusively to those with severe sleep disorders that fall outside the diagnostic criteria for narcolepsy yet are likely to clinically benefit.
(3) Short half-life can be good
One of the reasons Xyrem is ideal for sleep is precisely because of it's short half life. While it is presently too short requiring a second dose, it does not have any morning hangover effect which is not something that can be said for many sleep agents on the market. The clinical data from the patient population has shown NO dependence in people using it nightly for sleep.
(4) Xyrem is not going to be available for social anxiety
There are no clinical trials for this purpose. If there were one tomorrow - which there won't be - it would still be several years until Xyrem were approved for this purpose.
The political reality is Xyrem is going to be an incredibly controlled drug available only to those with severe sleep problems and perhaps fibromyalgia. The company knows that if it becomes the next Xanax, Congress will take away its right to make the drug as CSA-III substance.
(5) Every drug is cost-benefit decision for the individual
You generalize from your own bad experience with Xyrem and seem to conclude it would be horrible for anyone. I have benefitted and I know many other people have. Through the luck of genetics, I do not get nausea and it doesn't make me vomit, all it does is allow me to sleep, wonderful restful, deep wave sleep that no other drug has been able to give me.
It has also allowed me to decrease the dexedrine I was taking daily from 60 mg to 20 mg. This is common for those with severe hypersomnia who are finally able to get restful sleep with Xyrem and spares some of the side-effects of prolonged high dose amphetamine use.
I don't mean to demean your own negative experience with Xyrem. I have drugs that I hate too, and I agree it seems very dumb to take during the day for social anxiety. No one I have heard has suggested this, the government would not approve it, and any doctor who did so would probably lose her license. It's a moot point.
It's an important drug for people with narcolepsy and severe hypersomnia and could benefit other severely impaired people who would be willing to tolerate the inconvient dosing and side effects. It's not a panacea for anxiety.
This is the end of the thread.
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