FrustratedInBuffalo

Xyrem: Suggestions, Please

7 posts in this topic

Hello all,

I was diagnosed with Fibromyalgia over a decade ago and have been on various medications since (Lyrica, Cymbalta, a low dosage of antidepressants). A little over a year ago, I read that Xyrem treats Fibromyalgia very effectively, however it was not approved by the FDA for this purpose because it would be too difficult to regulate.

If anyone knows of effective alternatives to Xyrem or a way to procure it (I realize how that sounds), please weigh in. I'd appreciate any and all suggestions.

FrustratedInBuffalo

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A prescription for Xyrem from an approved physician is the only way to "procure" Xyrem. It is a Schedule I drug and a federal offense to possess or distribute it without a prescription. Prison would be an uncomfortable place to live with Fibromyalgia. A prescription for "off lable use" would need to be approved by your insurance to justify the price.

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Hank- I wasn't suggesting anything that would land me in prison. I was thinking more along the lines of a physician being able to petition for an "off label use," as you called it, but I didn't know if this is a possibility.

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Where did you read that Xyrem would help Fibro?

 

Ive been doing a lot of research about Fibro due to a close friend having it.  Are you thinking to help you sleep at night or is it supposed to help with pain?  Its a pretty nasty drug and hard to tolerate this is why I ask.  With all the trouble my friend has I cant see it being a very good option.

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I have read some research recently on Xyrem in relation to Fibro, but at a Sched I drug it is so very difficult to get it prescribed off label, especially since it only comes from one pharmacy. I don't know that you could ever get it unless you were involved in a study.

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There have been numerous studies that show how effective Xyrem is in treating both Fibro and Chronic Fatigue Syndrome. It was petitioned in 2010 to be legalized for that purpose, but the FDA turned it down because of the potential for abuse. I'm trying (unsuccessfully) to find a rheumatologist to prescribe it for an off-label purpose. It happens, but it's rare.

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I would think that only sleep doctors can prescribe Xyrem. 

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