Discussion in 'Fibromyalgia Main Forum' started by wallace02, Jan 28, 2010.

  1. wallace02

    wallace02 New Member

    Has anyone used Xyrem for FMS? I used it for 4 months with very positive results before Ins. Co. Cut off benifits. Just curious about what other people that used it thought. It was particularly helpful for my fragmented non-restorative sleep disorder due to FMS.


  2. hensue

    hensue New Member

    I know that is a stupid question? Insurance duh they will do anything to get out of paying.
    How much did it help you?
    I take klonopin to sleep but I do not dream. Did you dream and did you sleep all night?
  3. roge

    roge Member

    well there are not too many drugs that are PROVEN to increase slow wave sleep (something most if not all with FM lack) and Xyrem is one of those drugs. Even though I have yet to try it myself I believe it will show great promise for those with FM.

    Looking forward to FDA approval in next few months for FM , then insurance will cover as it is way to expensive for most without insurance.

  4. agcgmom

    agcgmom New Member

    I have FM and have been using xyrem for about 5 years. It has been the best medication decision since my diagnosis. If I sleep well, I do well! My insurance covers the cost except for a $50 co-pay each month.
  5. doro

    doro New Member

    I am not sure what it does with my fms - pain - but without it I could not sleep or sleep well. My husband says we probably would not be married. It knocks me out when I am either too overtired and then wired or just don't get that restorative sleep.
  6. doro

    doro New Member

    I have medicare part D and have found a plan that does cover this very expensive medication. Without coverage it averages about $1600 mos for the dose I take (high) about 10 ml first dose and then, only if needed, 5 ml 2nd dose. My coverage makes it affordable, meaning, I can afford it. It is still expensive, but probably the last med. I would give up.
    Just make sure your dr. knows how to dispense it. For fms, it is NOT necessary to wake up 4 hrs. later to take a 2nd dose.
  7. m1she11e

    m1she11e New Member

    For those of you that ARE getting insurance coverage, what diagnosis did you have to get first?
    Dont you have to have a sleep study done first?

    I have been so interested in trying this but I cant find a doctor who isnt scared to death of it and I dont think my insurance would cover it.

    Hopefully it will be approved for FM soon.

  8. bunnyrabs

    bunnyrabs New Member

    I'm with Michelle. I'd like to know how some of you are getting it covered for an unapproved use such as fibro. My doc has no problems prescribing it and already has tried to, but my insurance will only cover it for narcolepsy.

    Also, for those of you that are on this med, what other meds do you still have to take? Which ones were you able to eliminate or reduce? [This Message was Edited on 02/02/2010]
  9. chngthnmtoME

    chngthnmtoME New Member

    My doctor is checking around for pharmacies for it and will get back to me soon. I don't know if I can afford it right now as we have a high deductible insurance, but I am pregnant and it is safer than Ambien CR or Lunesta- neither of which work for me much anymore. They do not increase my deep sleep anyway, and Xyrem is supposed to be "state of the art" for fibro. I can't wait to try it. Was scared of it for years, until Dr. Papernik explained it to me. I just can't keep going on with little to no sleep, or such poor sleep when I do sleep that I just want to crawl into bed and die. Which I can't do with a little one here and another on the way (yes, I do think I am nuts to be having kids, especially at such a late age, but I was so much sicker during my 20's-30's, and my daughter is such a joy and a reason to eat better and live longer)!