Thank you ,
Hi Scarlett, I've been on Xyrem for fibromyalgia for at least a decade. I was originally prescribed it by the Fibro and Fatigue clinics when they expected it to be approved for fibromyalgia. Just a little history.. The fibromyalgia/Xyrem study results were very positive. People testified in front of the FDA. At the last minute the FDA decided that it would not approve Xyrem for fibromyalgia because they felt there were too many people with fibromyalgia so too much GHB would get on the streets. They could care a less about our health.. Anyway I save the rest of my frustration for another time.
Due to the fact that it's only prescribed for narcolepsy which is a much smaller population the price is outrageous. My prescription coverage pays over $10,000 a month. In order to get it first you need a great doctor to both prescribe it and to go to bat with the insurance company if need be. My insurance has never said anything but most will not just allow it. Without Xyrem Id be bedridden and most likely wouldn't be here.
Please keep me posted! Thanks!
- Xyrem Information for Consumers
- Xyrem Information for Healthcare Professionals (includes dosage details)
- Side Effects of Xyrem (detailed)
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The first responder "hopeandme" who has been under treatment with xyrem for cfs and fibromyalgia ha?
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