Desperately seeking XYREM on the west coast

[veggiegirlseattle]

Hi,

I have FM with severe insomnia and nothing have worked consistently so far. I am spending many sleepless nights and want to try Xyrem but have not been able to find anyone that would be willing to prescribe it at all. Unfortunately I do not qualify for any of the trials because I am on disability.

How did you get prescribed Xyrem? Do you know whom I should talk to in Seattle or anywhere else in Washington state? I am also often in the San Francisco Bay Area, so any leads there would be great.

Also - has anyone who had this prescribed for anything other than narcolepsy got it covered by insurance?

Thanks in advance,
Harriet

[daisys]

I was prescribed xyrem first by a doctor who moved to California, but he's working in a private teaching institute, so he's out.

Your first step is to call your insurance company and ask if they do cover xyrem and, if so, how much would your copay be. It may still be formidable.

In my limited experience, the doctor most likely to prescribe xyrem would be an integrative doctor. However, since they spend so much time with each patient, they may not work with insurance, (which would tie their hands, not just time wise, but also with their treatment decisions).

I don't know much about disability, but is there someone who is an advocate for you? If you could find a doctor who would do the sleep studies required, and try all the meds available to prove that they don't work for you, maybe you could get on that program that helps those of limited income get xyrem.

I sure hope you find success. You should be getting good, deep sleep, and enjoying rested days.

I just noticed that I didn't answer one question. I have alpha intrusion sleep disorder of FM, and my insurance covers xyrem.