Hi has anyone taken xyrem (GHB) for their restless legs? My neuro
put me on this stuff a few weeks ago just wondering if anyone has had any luck with it.
Xyrem
Has this medication provided any relief for you?
Xyrem is a drug whose active ingredient is sodium oxybate, commonly known as gamma hydroxybutyrate or GHB. Xyrem is used to reduce the number of cataplexy attacks in patients with narcolepsy. Cataplexy is a condition characterized by weak or paralyzed muscles.
There is no one "right treatment" for RLS. However, there are medications which have proven to provide relief for RLS found in the New To RLS section.
Please go read the actual algorithm (link to it is in this post: http://bb.rls.org/viewtopic.php?t=549 ) too or go directly to it http://www.mayoclinicproceedings.com/in ... D=744&UID= . It is possible that you will find one of these medications preferable to the XYREM.
You may want to print out the mayo algorithm and share it with your neurologist.
Hazel
Xyrem is a drug whose active ingredient is sodium oxybate, commonly known as gamma hydroxybutyrate or GHB. Xyrem is used to reduce the number of cataplexy attacks in patients with narcolepsy. Cataplexy is a condition characterized by weak or paralyzed muscles.
There is no one "right treatment" for RLS. However, there are medications which have proven to provide relief for RLS found in the New To RLS section.
Please go read the actual algorithm (link to it is in this post: http://bb.rls.org/viewtopic.php?t=549 ) too or go directly to it http://www.mayoclinicproceedings.com/in ... D=744&UID= . It is possible that you will find one of these medications preferable to the XYREM.
You may want to print out the mayo algorithm and share it with your neurologist.
Hazel
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Guest
Thought I'd add, Requip is the only medication the FDA approved for the treatment of RLS. All other medications are prescribed off lable ... so while Xyrem is not specifically listed in the algorithm, it may prove beneficial for you. However, in my opinion, there are several options available on the algorithm which are proven to be beneficial and have fewer side affects.
Have you had a sleep study? While sleep studies are not used to diagnosis RLS they can determine if you have additional sleep problems. I did read Xyrem should be used with caution if the patient has sleep apnea.
Hazel
Have you had a sleep study? While sleep studies are not used to diagnosis RLS they can determine if you have additional sleep problems. I did read Xyrem should be used with caution if the patient has sleep apnea.
Hazel
Article found at
http://www.immunesupport.com/library/bu ... fm?ID=6942
Fibromyalgia: Practical Treatments for the Family Physician by Richard N. Podell, MD immunesupport.com
Podell's comments on Xyrem...
Sodium oxybate (Xyrem) - a GABA-B receptor agonist: This drug is approved for a sub-type of narcolepsy, however there are two double blind studies which show benefit for fibromyalgia. [22,23]
The most recent report was by I. Jon Russell, M.D., presented in abstract at the November, 2005 meeting of the American College of Rheumatology. This study showed that Xyrem was substantially more effective than placebo with a P value—the likelihood that the result could have arisen by change—being less than one chance in 500. Still Xyrem is definitely not a cure-all. Only 34.5% of persons using Xyrem were classified as “responders”; but this was much better than the response rate for persons on placebo. Only 12.5% of placebo treated patients had a positive response.
My personal experience has shown truly dramatic improvement with Xyrem both for fibromyalgia pain and for quality of sleep. And it is encouraging is that sodium oxybate is one of only a few drugs with good data that proves it can increasing the duration of deep stage 3-4 sleep. However, I have also found that Xyrem is a difficult medicine to use. Initially, side effects are very common. These often but do not always fade out after a few weeks on the drug. Many of my patients have had to stop Xyrem because of these side effects.
I recommend that persons interested in taking Xyrem should have an over night sleep study first. Persons with sleep apnea should probably not be put on Xyrem at this point, since Xyrem can have respiratory depressant effects. The ordering physician should request that the sleep specialist specifically look for the presence of alpha-delta sleep. (This is not always done routinely.) Anecdotal suggestions are that persons with the alpha-delta pattern—about half of fibromyalgia patients—may be more likely to improve from taking Xyrem.
It is important to strictly manage and monitor the use of sodium oxybate as it is identical to the street drug GHB (gamma hydroxybutyric acid). To prevent abuse and assure physician and patient education, all U.S. prescriptions for sodium oxybate are processed through a single mail-order pharmacy. There have been no cases of abuse reported with this program.
http://www.immunesupport.com/library/bu ... fm?ID=6942
Fibromyalgia: Practical Treatments for the Family Physician by Richard N. Podell, MD immunesupport.com
Podell's comments on Xyrem...
Sodium oxybate (Xyrem) - a GABA-B receptor agonist: This drug is approved for a sub-type of narcolepsy, however there are two double blind studies which show benefit for fibromyalgia. [22,23]
The most recent report was by I. Jon Russell, M.D., presented in abstract at the November, 2005 meeting of the American College of Rheumatology. This study showed that Xyrem was substantially more effective than placebo with a P value—the likelihood that the result could have arisen by change—being less than one chance in 500. Still Xyrem is definitely not a cure-all. Only 34.5% of persons using Xyrem were classified as “responders”; but this was much better than the response rate for persons on placebo. Only 12.5% of placebo treated patients had a positive response.
My personal experience has shown truly dramatic improvement with Xyrem both for fibromyalgia pain and for quality of sleep. And it is encouraging is that sodium oxybate is one of only a few drugs with good data that proves it can increasing the duration of deep stage 3-4 sleep. However, I have also found that Xyrem is a difficult medicine to use. Initially, side effects are very common. These often but do not always fade out after a few weeks on the drug. Many of my patients have had to stop Xyrem because of these side effects.
I recommend that persons interested in taking Xyrem should have an over night sleep study first. Persons with sleep apnea should probably not be put on Xyrem at this point, since Xyrem can have respiratory depressant effects. The ordering physician should request that the sleep specialist specifically look for the presence of alpha-delta sleep. (This is not always done routinely.) Anecdotal suggestions are that persons with the alpha-delta pattern—about half of fibromyalgia patients—may be more likely to improve from taking Xyrem.
It is important to strictly manage and monitor the use of sodium oxybate as it is identical to the street drug GHB (gamma hydroxybutyric acid). To prevent abuse and assure physician and patient education, all U.S. prescriptions for sodium oxybate are processed through a single mail-order pharmacy. There have been no cases of abuse reported with this program.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.
Music can be made anywhere, is invisible and does not smell. --W H Auden
Music can be made anywhere, is invisible and does not smell. --W H Auden