Narcolepsy drug [Xyrem] curbs fibromyalgia pain...

Discussion in 'Fibromyalgia Main Forum' started by kjfms, Jan 26, 2009.

  1. kjfms

    kjfms Member

    Narcolepsy drug [sodium oxybate (Xyrem)] curbs fibromyalgia pain

    Wednesday, Jan. 21, 2009; 4:26 PM

    NEW YORK (Reuters Health) - The drug sodium oxybate relieves pain and improves function, with few side events, in people who suffer from the chronic pain syndrome known as fibromyalgia, researchers report in the January issue of Arthritis and Rheumatism.

    Sodium oxybate is approved in the US for the treatment of excessive daytime sleepiness in patients with narcolepsy, a condition that causes people to fall asleep involuntarily, and for the treatment of cataplexy, a sudden weakness in the muscles that accompanies narcolepsy.

    Dr. I. Jon Russell of University of Texas Health Science Center at San Antonio and colleagues studied the effects of sodium oxybate in 188 fibromyalgia patients.

    After discontinuing their pre-study medications, the patients were randomized to sodium oxybate or matching placebo once nightly for 8 weeks.

    One hundred forty-seven patients (78 percent) completed the trial and, according to the researchers, patients taking sodium oxybate reported significantly less pain and improved sleep and quality of life, relative to patients taking placebo.

    "Sodium oxybate therapy was well tolerated and significantly improved the primary outcome variables," Dr. Russell told Reuters Health.

    "In addition, significant improvement was seen with many of the secondary outcome variables which addressed a wide variety of the fibromyalgia syndrome symptoms."

    Less than 28 percent of patients reported nausea and less than 18 percent reported dizziness. Most episodes tended to resolve and caused few patients to withdraw from the study.

    The investigators conclude that "this proof-of-concept study suggests that sodium oxybate is effective and safe for the management of fibromyalgia syndrome symptoms," and that further investigation is warranted.

    SOURCE: Arthritis and Rheumatism, January 2009.


    This information may have already been posted here, I am not sure. I rarely visit here anymore...

    Anyway, I thought this was worth sharing. I will be discussing this with my physician at my next visit on 02/12/09, it is my hope that I will be able to try this medication.


    Karen :)

    [This Message was Edited on 01/26/2009]
    [This Message was Edited on 01/26/2009]
  2. gapsych

    gapsych New Member

    Have you been away from the board or is my memory worse than usual?

    I take Provigil and I find that it does help with the pain.

    This is very interesting. I wonder what the difference is between this and Provigil(modafinil)?

    I had never heard of sodium oxybate being used to treat pain.

    THanks for the information.


    ETA Evidently I did not see the last part of your post. How are you doing?
    [This Message was Edited on 01/26/2009]
  3. gapsych

    gapsych New Member

    I just looked up sodium oxybate and it is Zyrem. I do know of someone who took it and had success with it and have often wondered if she is still using it. We lost touch with each other.

    I believe it is the same as the "date rape" drug but not in the same dosage. If I am wrong about that, let me know.

    She had to watch videos before being approved for the medication. She was the only one able to pick it up as it came in the mail . At that time pharmacies did not stock it.

    She also had to take a dose before bedtime and another one during the night.

    It was very effective for her but she had severe narcolepsy and would have the cataplexy episodes. She was also not allowed to drive for so many hours after taking it.

    This was many years ago, so do not know if any of the above has changed.

    Take care.


    ETA You might want to put zyrem in your title. I think there are several people on the board who have or are taking zyrem.

    [This Message was Edited on 01/26/2009]
    [This Message was Edited on 01/26/2009]
  4. Juloo

    Juloo Member

    That's a great step to making insurance have to pay for this...I can't afford it out of my own pocket this year. It was difficult to find the correct dosage, but it is very helpful to me.

    Thanks for posting this!
  5. kjfms

    kjfms Member

    Thanks for the information gapsych, I didn't have time to do any research until this evening and then only a small amount.

    Yes sodium oxybate/Xyrem is a form of GHB. It is a Schedule III drug, which means it is a controlled substance. From the little I read there are quite a few side effects associated with Xyrem.

    I doubt that I am a candidate for this but I will discuss this option with my physician. If it is expensive there is no way I will be able to afford it.
  6. kjfms

    kjfms Member

    I do believe this would help in getting insurances to pre-certify this drug for those who have insurance.

    Thanks for the information, I figured it was expensive...aren't they always.

  7. hermitlady

    hermitlady Member

    I just looked this up. Sounds kind of scary, it's also known as "The Date Rape Drug". I don't really understand how it works other than it is extremely sedating and taken at night while you're in bed. Maybe it helps the body repair itself better during sleep because you're sleeping deeper(?).

    Here's a bit of info if you're interested:

    What is XYREM?
    XYREM is a prescription medicine used for the treatment of narcolepsy to reduce too much daytime sleepiness and reduce cataplexy (weak or paralyzed muscles) attacks. XYREM taken at night has been proven to help people with narcolepsy to stay awake better during the day and to have fewer cataplexy attacks.

    Important Safety Information

    XYREM is a controlled substance. Controlled substances are medicines that, if abused, may lead to varying degrees of physical or psychological dependence. XYREM is a Schedule III drug - which means that it has a moderate risk of dependence. If you sell, distribute, or give your XYREM to anyone else or use it for purposes other than what it was prescribed for, you may be punished under federal and state law by jail and fines.
    It is very important to keep XYREM out of reach of children and pets.
    XYREM can cause serious side effects including trouble breathing while asleep, confusion, abnormal thinking, depression and loss of consciousness. Tell your doctor if you have any of these problems while taking XYREM.

    The active ingredient of XYREM is a form of gamma-hydroxybutyrate (GHB). GHB is a chemical that have been abused and misused. Abuse and misuse of XYREM can cause serious medical problems, including seizures, loss of consciousness, coma, and death. Abuse of XYREM can lead to dependence, which may include craving for the medicine and severe withdrawal symptoms.


    [This Message was Edited on 01/26/2009]
  8. kjfms

    kjfms Member

    As with any medication it is always recommended that it discussed with a physician/pharmacist.

    I found the article interesting and thought I would pass it on.
  9. hermitlady

    hermitlady Member


    Sorry if I sounded like I was debunking this med, I didn't mean to. I just always look at the side effects of meds cuz I'm a person who gets hit w all side effects possible! Makes it hard to have successful results w many meds.

    I read about several studies they've done w FM pts. It does sound promising, hopefully there will be many people who benefit from it.

    It always amazes me how one drug can be used to treat several different disorders. From what I read, it's taken in a low dose for FM and the main effect is improving sleep quality. Might be a life saver for folks who haven't been helped by other meds and need improved sleep.
    Thanks for posting this, I hope if someone tries it w good results that they'll let us know.
  10. celeste1226

    celeste1226 New Member

    Hello all
    My doctor just told me about this drug 2 weeks ago since cymbalta is not working very well for me anymore. I was also on Lyrica and cymbalta at the same time no help. so he said the last resort would be this drug. He did tell me that it is known as the date rape drug so for me to read up on it and let him know this thursday jan 29 if I want to try it. He told me to go directly to the manufactures website and read the info there. so I did. and it sounds scary to me and i talked to my husband and we decided not to try it. I am just afraid of the side effects. if anyone has tried it please let us all know how it worked.

  11. agcgmom

    agcgmom New Member

    I have been taking xyrem for almost 4 years. It has made a world of difference. Sleep has been the key to my improvement. I get 3 hours of deep sleep with each dose (2 doses every night). I take ambien to get to sleep (I get one hour sleep with ambien) and xyrem to keep me sleeping. I feel rested and ready to get up in the morning and am rarely sleepy during the day and my FM symptoms have been greatly diminished. I have found that I do not need the full dose to get the desired results. I have had some of the side effects like nausea/vomiting on rare occasions. It only happened when I was awake before I was supposed to. So, I am able to wake in the middle of the night if I need to but the dizziness can be very uncomfortable. I am able to get up and get to work everyday with no problems. Xyrem is a very short acting drug and that is why two doses are the norm. I have had none of the other side effects at all. I am off most of the typical meds and I give xyrem all the credit. My insurance pays all but $60 co-pay each month. I sure hope the FDA approves this med so that more people are able to benefit.
  12. Didoe

    Didoe New Member

    I'm late to the 'party' hearing about Zyrem. NYTimes has been writing about the CFIDS retrovirus XMRV and over the past couple of weeks alot of incredible-very good, really bad-info has been surfacing.

    The current news, according to the Times, is that Zyrem is $2K monthly with all the same regulations in place-user must sign for delivery, side effects etc.

    my interest is 2 fold, as someone with severe FM trying to maintain full-time employment, its like keeping a candle lit at both ends. I need accomodations, had them briefly was treated like a pariah, gave up most of my accomodations (1 day work at home, 4 days office, leave half hour earlier, come in half hour earlier-really generous wasnt it?)
    In the current economic situation, plus my age, I'm trying to do everything asked and payin or it physically. Sleep become more elusive every day.

    My sleepless record is about 6 days and even falling asleep at that point is surface skimming; slightest sound etc. wide awake. My doc prescribes both ambien and an anxiety med, but with inconsistent results. I was in a meeting, yawning, shifting to stay awake and my boss asked, annoyed, 'are you tired?' well duh, dern right I am.
    Catoplexy is also fascinating, as I have nodded at while at work, while working mind you and began dreaming. Staring at computer screen, typing, barely able to move, keep my eyes open-I can feel myself going under, sinking and cant control it, in fact fighting it sometimes makes it worse. I dont know that I have either narcolepsy or catoplexy, doc sent me to neuro who scheduled an overnight sleep test at a sleep clinic but then I was told the out of pocket price and cancelled. Might be time to save up and get it done.

    Zyrem...yeah, so in the course of discussing all the above, zyrem is coming to the forefront again as a component in looking at the various aspects of FM, sleeplessness, pain, numb/dumb feeling.

    All I can say is we are living in some incredibly exciting time; after years of being told we're fruit loops and its all imaginary or from sugar intake, there's finally some public acknowledgement by the NIH and scientific community this is all real, and epidemic.

    In the 1990s a Dr. DeFreitas discovered thru research critical data on a new retrovirus showing in CFDS patients; her research was squashed by the NIH who was promoting the insanity theory of CFDS/ME/FM and are now having to eat their words, but Dr. DeFrieitas' career was destroyed, her work discredited.

    anyway, maybe before I retire or start snoring in a staff meeting, my doc will prescribe Zyrem.
  13. AuntTammie

    AuntTammie New Member

    You said, "Catoplexy is also fascinating, as I have nodded at while at work, while working mind you and began dreaming. Staring at computer screen, typing, barely able to move, keep my eyes open-I can feel myself going under, sinking and cant control it, in fact fighting it sometimes makes it worse. I dont know that I have either narcolepsy or catoplexy"

    Cataplexy is not falling asleep. It is a complete loss of muscle tone and response - usually occurring as a result of a strong emotional response like laughing or crying very hard. A person may not be able to move at all, or his/her knees may buckle, or he/she may drop something he/she is holding, but he/she is still awake. The falling asleep thing sounds like narcolepsy, and people with narcolepsy often have cataplexy, too, but what you described is not cataplexy. Or falling asleep could simply be because you are tired, and not narcolepsy.

    Anyway, whatever it is I hope that you can find some relief.
    [This Message was Edited on 10/17/2009]
  14. hannahfaid

    hannahfaid New Member

    I took xyrem breifly... knew right away it wasnt for me... the warnings are enough to make ya paranoid to take it... be sure to let family memeber know you are taking it, in case you are sleepwalking and doing stupid stuff..well, hello ambien CR(CL) ? always have someone home in case you happen to do a header into the sink or tub etc? LOL just too many cons. plus it did nothing for me too inconsistent
    BTW did NOTHING for pain just makes ya dopey
  15. chngthnmtoME

    chngthnmtoME New Member

    I am like Didoe here- nothing puts me to sleep, and I've gone scary lengths of time without sleep. My doc wants me to try it, and it is safer during pregnancy than the Lunesta and Ambien CR that I take with extremely uneven and unsatisfactory results. Ambien in the regular form causes me anteretrograde amnesia of the worst sort. I never knew what I was waking up to in the morning. Things would be moved, my husband would be furious, and I would have taken way too much in the night not realizing I'd taken it. Total blackouts. I will never know what I was like during those times.

    As for Xyrem being "the date rape drug," *any* drug can be used that way. Alcohol springs immediately to mind! Ambien itself is a cousin to Rohypnol, *the* date rape drug. I have shied (sp?) away from Xyrem due to bad associations, but my doc insists it will not cause me to "blackout" a la Ambien, I'll get better sleep, it's safer during pregnancy. So, if I can afford it, I'm going to try it. I can't say anything about it until I do.

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