Study xyrem and fibromyalgia

Discussion in 'Fibromyalgia Main Forum' started by mrstyedawg, Nov 19, 2006.

  1. mrstyedawg

    mrstyedawg Member

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    My doctor prescribes Xyrem to his patients that have Firbo. He said that he is having great success with this drug. I found the following article that I thought you might me interested in:

    Narcolepsy Drug May Hold Hope for Fibromyalgia Patients
    A lack of deep, quality sleep is one of the major problems experienced by fibromyalgia (FM) patients. It has been theorized that this lack of restorative sleep may even be the primary cause of the pain and fatigue that are also key symptoms of FM.
    A clinical study conducted by researchers from the University of Texas Health Science Center at San Antonio and the Oregon Health Sciences University in Portland found that the drug sodium oxybate, currently used to treat cataplexy in narcolepsy patients, was effective in both improving sleep and reducing pain perception for FM patients.

    Study Criteria According to a press release issued by the University, Dr.

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    I. Jon Russell, associate professor of medicine at the University of Texas Health Science Center at San Antonio and the study’s lead researcher, along with his colleagues Drs. Robert M. Bennett in Portland and Joel E. Michalek in San Antonio, conducted a randomized, double-blind, placebo-controlled, multi-center clinical trial. The centers randomized 188 fibromyalgia syndrome patients to receive active treatment with one of two doses of sodium oxybate or with a placebo. One active treatment group took 4.5 grams of sodium oxybate per night, while a second group took 6 grams per night. The sodium oxybate was administered at night in two oral doses. The trial lasted eight weeks.
    Before they began to take the study medication, all of the study participants were withdrawn from other medications used to treat their fibromyalgia symptoms. Of the 147 patients who completed the trial, 51 took 4.5 grams per day, 44 took 6 grams per day and 52 took a placebo.

    Study Results “We saw significant clinical benefit with both doses of sodium oxybate compared with placebo,” Dr. Russell stated in the press release. “The patients’ self-reported pain and their perceptions of how well they slept improved among both dosage groups. The tenderness found during in-office examinations was significantly improved with the 6 gram dose.”

    Disclosure Sodium oxybate is marked in the U.S. as Xyrem and is produced by Orphan Medical, a subsidiary of Jazz Pharmaceuticals, which funded the study. Because no medication is currently FDA approved for treating fibromyalgia, physicians must treat the disorder with medications officially approved for other purposes. It is up to every physician to determine whether Xyrem, or any other medication, is appropriate for each individual patient.

    As with any new drug or new use for a current drug, additional studies will need to be done. But when promising results are reported for any new treatment option, it helps keep hope alive for the millions of us living with this disease.
  2. butterfly83

    butterfly83 New Member

    Anyone know if Xyrem is like Provigil? I remember Provigil was a narcolepsy drug. Hoped it would help with energy but it didn't.
  3. mezombie

    mezombie Member

    If you click on the "Clinical Trials" tab at the top of this site and scroll down to "Fibromyalgia Studies", you'll find the most up-to-date information on Jazz Pharmaceuticals ongoing clincal trial testing Xyrem for Fibromyalgia. You'll find a list of participating researchers as well. Maybe one is in your area.
  4. Daisys

    Daisys Member

    Bumping for others to read!
  5. millennia

    millennia New Member

    anyone know anything about the side effects? Not what they say may happen, but real experience?
  6. julieisfree05

    julieisfree05 New Member

    My doctor has done two studies on Xyrem and FM, and is involved in the one mentioned in this article (he and Dr. Russell are colleagues).

    Xyrem can help with fatigue because it can help with sleep. Without level 3/4 sleep, your energy will be depleted. That's the biggest difference between Xyrem and Provigil.

    Side effects, in my experience:

    Loss of appetite - but that was OK, I needed to lose weight.

    The possibility of becoming "overmedicated" as your body heals. See my posts on Xyrem for full details.

    This has been a miracle medication for me, and I would urge others with serious sleep issues to investigate it.

    - julie (is free!)
  7. bunnyrabs

    bunnyrabs New Member

    julie,

    Did you have a sleep study before you were put on xyrem?