Dangers of Xyrem?

Discussion in 'Fibromyalgia Main Forum' started by Musica, Dec 27, 2005.

  1. Musica

    Musica New Member

    My rheumy sent me back to the sleep specialist, hoping that the SS would find something to improve with sleep that would take away the pain that isn't RA. Rheumy suggested SS have me try Xyrem. Well, SS is somewhat reluctant because insurance will fight it because of cost, but also because while he tries to work with rheumy's theories about sleep and fibro as much as he can, his oath is to "do no harm". He doesn't think I have much left in the way of sleep issues since I am on CPAP for severe apnea. I had an incredible 20% Stage IV during the titration study, which is amazing for anyone during a titration study. So he doesn't think even another sleep study would show anything but is willing to write one up for me. I am using Ambien as needed to help sleep, although I have never had to sleep 8 hours in order to wake up from it. In fact, it hardly even causes me to feel groggy.

    It appears Xyrem has some dangers associated with it. Seizures, especially. How much does anyone know about the possible dangers of Xyrem? If there isn't a serious sleep problem, would it increase the risk of seizures?
  2. SUZIEQ637

    SUZIEQ637 New Member

    Hi!

    I've gone back a couple of months and read the postings re xyre. I have been on it for 4 weeks, 4mll, 2x per night. I'm not crazy about the middle of the night, but it does work.

    I think one of the reasons fibro patients feel that they have more pain is because the deep sleep permits the body to stay in one position for a long time. Previously, I would toss and turn the whole night, as soon as I became stiff or uncomfortable. Staying in one position makes the pain feel worse when you do finally move.

    I had hoped that I could stop taking other sleep meds (atavan) but when i try to reduce from 2 pills to 1 I am tossing and turning the entire night, half awake. The xyrem does not seem to work alone or with less atavan. Will discuss this with md when I can get to see him.

    Any thoughts would be helpful!
  3. intensemom

    intensemom New Member

    HI! I'm new here! I have been on xyrem for 11 days and I LOVE IT! I really has no side effects as it only stays in your system for 4 hrs. at the most. If it isn't working for you it is because your not on a high enough dose...I'm taking 6 ml twice per night. The doc said he would bump me up to 7.5 ml twice per night if 6 didn't work....but 6 ml x2 is working because I had a great day today...Not tired....actually energetic! I go to the FCC in Detroit, MI.

    Hope this helps!

    Tracy
  4. auntyemnga

    auntyemnga New Member

    but you do need to beware of any side effects. I started at the end of October with 4ml twice nightly. I am now up to 8ml twice nightly. It knocks me out. No more tossing and turning for me!

    My son doesn't like me on it cause when my kids come into my room they have a hard time waking me up.....duh. If I could just get them to stop coming in my room....unless the house is in fire--LOL.

    I also take 25mg of Trazadone about an hour before the Xyrem. It doesn't say it in their pamphlet but I read on a different website to swig water in my mouth after I take the Xyrem due to the salt content. I do that and then go immediately to bed.

    Good Luck,
    auntyem
  5. MaryCecelia

    MaryCecelia New Member

    Can one possibly work and be on Xyrem? I figure the sleep specialist will recommend it, and I just wondered becuase I work part time. I'm sure glad to hear that it's helping some of you.
  6. Juloo

    Juloo Member

    I work about 20 hours a week -- basically 3 full days. I am taking Xyrem 2x a night. I am still titrating -- trying to find the optimum dose. But when I take it, I don't even think about taking a nap the next day. I get through a whole day without. Since I started taking Xyrem about 6 weeks ago, I think I've only taken 5 naps -- and three of those were the week I was sick and stopped taking it.
  7. SUZIEQ637

    SUZIEQ637 New Member

    I am still having trouble getting out of bed each morning. I think the hangover effects are from the atavan. unless I can stop taking the atavan I have a feeling I won't feel energized from the deep sleep from the xyrem.

    MD will probably have to raise the dosage before I can eliminate the atavan.

    Any suggestions?
  8. Musica

    Musica New Member

    Do you know anything about the risk to brain or heart?

    Do you have to sleep 8 hours? I rarely am in bed 8 hours, except on the weekends.
  9. abbylee

    abbylee New Member

    And it works great. After about six weeks on it, I noticed that my pain was better, my neck wasn't too stiff and I wasn't falling asleep during the day anymore.

    And the best part is that once you're on the best dose for you, it doesn't have to be increased as with other pain meds.

    It is expensive, but my insurance pays its part.
  10. Musica

    Musica New Member

    Has anyone looked into financial assistance? Unfortunately, my pharmacy benefit has a max payout of $2000 per year, and I have a 50% copay! My Humira would be $1500-1600 per MONTH, but Abbott Labs has qualified me for assistance and sends it to me for free. I know there are a lot of programs out there, although most make you be dirt poor or on Medicare.

    Does it knock you out for 8 hours? Are you wide awake after your first 4 hours?
  11. bunnyrabs

    bunnyrabs New Member

    It sounds from the amount of posters in this thread that Xyrem is being prescribed quite a bit for fibro now. I used to only see two or three users reply to Xyrem threads.

    Any idea when it will officially be approved for use in fibro?
  12. Musica

    Musica New Member

    I think there are some meds that are used for mood disorders that STILL aren't officially sanctioned for those, only as seizure medications! I know there have been or still are long studies for Xyrem and fibro, so the day could be coming. I guess that would help with insurance, wouldn't it?
  13. SUZIEQ637

    SUZIEQ637 New Member

    There have been at least 2 clinical trials using xyrem for fibro. The results were incouraging and doctors are prescribing xyrem for fibro while it is still off label. my doctor has 67 patients on xyrem for different reasons.

    I have been on it for four weeks. I have not yet seen the kind of results I expected. I understand that you have to stick with it until dosage adjustments are good.

    Well, we will see.......