xyrem weight loss - updated

Discussion in 'Fibromyalgia Main Forum' started by ephemera, Jul 18, 2008.

  1. ephemera

    ephemera New Member

    Those of you currently on Xyrem & those of you former Xyremers, have you experienced significant weight loss on the medication?

    Without trying, I've lost 31 pounds since November '07 & my sleep doc is concerned. I researched the internet & there is quite a bit of info concerning weight loss. Some people have even been bounced off the drug because of it. The letstalkaboutsleep site has several experiences.

    I thought my loss was due to less stress having survived the ALJ hearing, less compulsive eating in spring & summer than in the winter, & switching to more organic foods.

    Has anyone here had weight problems with Xyrem? It's been a really important drug for me, allowing me to sleep & dramatically shift my sleep schedule. I would hate to lose it, but then I felt that way about Zelnorm years ago.

    best thoughts to all

    I've completed another to update you on my current situation. Follow the thread for today's entry 9/11/08.
    [This Message was Edited on 07/18/2008]
    [This Message was Edited on 09/11/2008]
  2. Juloo

    Juloo Member

    When I started Xyrem, I was also started thyroid med. I lost 25 lbs. without trying at all. (It later came back when I went off Xyrem and shifted around on other meds.)

    In my case, I needed the weight loss. I'd say it was a combination of not eating after 7 p.m. (because of the Xyrem instructions) and the compulsion to eat and eat and eat just went completely away.

    One evening my mother-in-law took us out to a great restaurant -- normally I'd be able to go soups-to-nuts through the whole thing, but I could only eat half my delicious sea bass and didn't even order dessert because I wasn't hungry. When I wasn't on Xyrem, I would have had a hard time doing that voluntarily.
  3. sleepyinlalaland

    sleepyinlalaland New Member

    for a couple months and I experienced a reduction in appetite. In fact for the first several days I had NO appetite and had to remind myself to eat. I could stand to lose some weight, but not even caring about eating was actually depressing for me.

    My appetite did normalize somewhat, but I'm sure it is also the fact that you should not eat for about 5 hours before taking it at bedtime would add to the weight loss.

    I'm glad to hear it has been helpful for you, and I hope you are able to figure out the weight thing and say on it.
  4. lrning2cope

    lrning2cope New Member

    What is xyrem ? I would LOVE to lose some weight . If this med/supplement makes you lose weight and helps my fibro, I will ask my doctor for it.

  5. Juloo

    Juloo Member

    Xyrem is a *very* controlled substance. Only one pharmacy sells it, your doctor must be authorized to prescribe it, and you must be educated before use. Your insurance will pay for it if you have been diagnosed with narcolepsy with cataplexy. If your doc prescribes off-label, you will pay out-of-pocket at about $400 a bottle -- with two to four bottles required per month, generally, although dosage is very individual. It is a sleep medication.
    [This Message was Edited on 07/18/2008]
  6. lrning2cope

    lrning2cope New Member

    I didn't realize what Xyrem was for . It doesn't sound like something to take unless you really need it for it's intended use. I have apnea and other sleep disorders , but not narclepey(sp)

    Thank you for answering my question !

  7. gapsych

    gapsych New Member

    Is GHB the same as Xyrem?

    I do know one person with severe narcolepsy who was on Xyrem and it helped her a bit but then lost it's effectiveness.


  8. deliarose

    deliarose New Member

    Lost 8lbs in 11 days and my mind too..I quit.. the resulting anxiety.. paranoia was too much for me.

    It's mechanism of action is unknown, per one doc I saw.
  9. Juloo

    Juloo Member

    *I DON'T KNOW* if this is right, but I *think* Xyrem is GHB plus some type of sodium molecule addition...to be able to patent it. I could be completely wrong. No doubt someone can correct me. But essentially, yes, Xyrem is GHB.
  10. sleepyinlalaland

    sleepyinlalaland New Member

    IS a salt, sodium oxybate.

    "Sodium oxybate (Xyrem) is the sodium salt of gamma hydroxybutyric acid (GHB), a naturally-occurring central nervous system transmitter with sedative and anesthetic properties. Sodium oxybate (Xyrem) is a schedule C-III controlled substance. Other forms of GHB are considered schedule C-I controlled substances."

    I am curious though, if it is purposely made MORE salty when used for medical purposes (as in XYREM). The taste is SOOooo salty, I wonder why people don't detect it in their drink in cases where it was used under it's notarious name of the "date rape drug".
  11. Juloo

    Juloo Member

    You're right. UGH! It really is nasty tasting!
  12. ephemera

    ephemera New Member

    Yes, the taste is salty.

    But after months & months of drinking boiled Chinese herbs, I hope nothing will ever taste that bad...
  13. moreinfoplease

    moreinfoplease New Member

    Has anyone gotten their insurance to cover this who does not have narcolepsy?

    I saw a doctor yesterday who just finished a study of xyrem for fibro. He said the results are going to be out in October by the way.

    He said that I would not have qualified for the study since I do not have the fibro tender points and am on some other meds.

    But he said the could possibly get me xyrem to try still, which I would like to do.

    However, then he said getting insurance to cover it might be a fight. Thus my question above.

    He told me he wanted to regulate my circadian rhythm, which is way off, with melatonin and tylenol pm, first. So I am supposed to go back in 1mo to further discuss the xyrem.

  14. ephemera

    ephemera New Member


    yes, my current insurance covers this (I have FM CFS delayed sleep cycle, etc.) & has done so for the year I've been on it. I would have opted to petition for coverage if it wasn't on their list.

    Next month I start medicare & 2 of the major drug coverage companies in my area include it in their formulary. AARP Preferred & Medco Choice. AARP has it as a Tier 3, Medco as Tier 2. I did not try the smaller ones which had no ratings or reviews.
  15. hensue

    hensue New Member

    I know my dr would not give it. Do I need to go to a sleep place? Did I see where there is a clinical trial that says this helps fibro pain and sleep. Do you go into the stage 4 sleep?
    Please let me know of course i want to be careful
  16. hensue

    hensue New Member

    Can we find out what the name of the dr is that has done the study. Someone said on here and results in October.
    I want to find out now. does it help and can i get it.
    Does it help sleep and pain?
    Thanks sue
  17. ephemera

    ephemera New Member


    I heard back from my primary doc today. He wants to wait until later in the summer to see if my weight stabilizes.

    Also, he suggested my weight loss could be from something else.

    When you went off Xyrem, what did you take instead of it?
  18. hensue

    hensue New Member

    If you use it and it helps you sleep does anyone get pain relief that is what i am trying to get at!


  19. Homes

    Homes New Member

    I lost weight when on xyrem. I believe it was due to taking the drug. Xyrem did not work for me and I got off of it after several months. I would say that with any drug, each individual is going to react in their own way.

    If it does not work, then don't keep on taking it. Call your doctor and get on something else. I switched to Lyrica and it temporarily helped a lot. Now it helps a little, but my weight increased 5% from my normal body weight. I also am able to exercise a bit more, which probably increases my pain. I feel that if I did not work out and took Lyrica it would probably work better, but then you will get all the results from not working out, i.e. weight gain, depression, etc..
  20. heapsreal

    heapsreal New Member

    When GHB was supplement, body builders use it for weight loss, supposedly through its stimualation of growth hormone, which makes sense since growth hormone is only produced when in deep stage 4 sleep. Wish it was available here in australia.Lots of stage 4 sleep now would be good at 0300am,got 3.5hrs sleep from imovane.