Was told Xyrem is a med used for narcolepsy....

Discussion in 'Fibromyalgia Main Forum' started by CockatooMom, Jun 14, 2006.

  1. CockatooMom

    CockatooMom New Member

    Went to my CRNP today about my depression & bi-polar meds. We also talk about how much sleep I'm getting.

    I asked her about Xyrem for sleep. She had never heard of it so she looked it up. She read to me that it was used to treat narcolepsy, so it SHOULD keep me awake!

    What do you all think?

    CockatooMom
    "E"
  2. ldbgcoleman

    ldbgcoleman New Member

    It is used to treat narcolepsy but iut doesn't keep you awake. it gets you into the very deep stages of sleep you need so you can stay awake when you are supposed to. you may also hear it is ther date rape drug and it is but in a much higher dose than people with FM use. It is a controlled substance and is only available from the pharmacy of the manufacturer through the mail. Lynn
  3. julieisfree05

    julieisfree05 New Member

    CockatooMom,

    If you search for my posts "Xyrem saved my life", it will tell you how Xyrem is used to treat FM, how it put my FM/CFS into "remission", and the studies my FM specialist has done on it.

    The studies are so promising that it is expected to be approved by the FDA within the next year as the FIRST medication ever specifically approved to treat FM.

    Basically, it is the "date rape drug", GHB, but it is VERY tightly controlled and it's pharmaceutical grade - not what you would get off an internet recipe!

    My story is in the posts I mentioned.

    - julie (is free!)

    I rant, therefore, I am.. - Dennis Miller
  4. place

    place New Member

    What is an CRNP? Also, I think Xtrem would only be know by people who spcecialize in FM. Even then, you have doc's who don't follow what the new studies are.

    Good luck and keep us posted on your progress with xyrem!
  5. CockatooMom

    CockatooMom New Member

    A CRNP is a Certified Registered Nurse Practicioner, kinda like a physicians assistant, can prescribe meds and all.

    But, yes she works in the fiels of psychiatric disorders and depression.

    I am planning on talking to my primary care physician about this at my next appt, the 27th.

    I have no isurance and cannot see a rheumy right now.

    I think I'll print out the post from "julieisfree" and take with me.

    Thanks all!

  6. mrdad

    mrdad New Member


    I don't know anything about Xyrem but I understand Provigil is being use in some cases for fatigue. It is a narcolepsy drug that has been "adopted' by some Docs for CFS etc. You should be able to find it on "Google". I'm considering speaking with my Doc about it soon. I understand it is expensive though.
    Have a Good Eve,
    MRDAD
    [This Message was Edited on 06/14/2006]
  7. julieisfree05

    julieisfree05 New Member

    Xyrem is being used "off-label", like all other medications prescribed for FM/CFS, to treat the sleep disorder that is commonly associated with FM.

    My neurologist has been using it for Narcolepsy for years, but started using it on a few FM patients about 3 years ago. My FM specialist (a rheumy) has done a couple of studies and is involved in the current "multi-center" study.

    If you google "Orphan Pharmaceuticals" (the only pharmacy allowed to dispense Xyrem in the US) they have information on its use in treating FM and the past and on-going studies.

    Workers' Comp paid for my prescription, but I understand that it runs about $500 a month. After it's approved for FM (probably within the next year), insurance should cover it.

    If your insurance is covering other "off-label" medications right now, you can use the research at Orphan's website to argue that they should pay for a trial of Xyrem - IF you decide that you want to try it.

    Hope this helps,

    - julie (is free!)

    Forgive.
    It's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
  8. wildflowers2

    wildflowers2 New Member

    Xyrem, I will get mine this friday. It is a highly controled narcotic and only one pharmacy in the country carries it.

    And yes it is the date rape drug. My Neurologist
    gave it to me and said.....that's what was used the date rape
    drug but, in my case I didnt need to worry about that.

    Now how does he know..I could be sitting next to Stephen Segal in the next week and have my way with him. *laughing*

    If, only I had the energy!!!!!!


    Anyway, I am getting it to get a better REM sleep.
    It helps the 2nd and 3rd stages of sleep.

    And darnit.....it better help me with my nite time eating
    syndrome that I found out was caused by using Ambien.

    As well as my sleep....








  9. place

    place New Member

    Please keep us posted!!!! I am going to bring it up to my Rheumy but I don't think it's going to fly.

    Good luck!
  10. julieisfree05

    julieisfree05 New Member

    Hi Wildflowers2,

    I wanted to clarify a couple of things in your post..

    Xyrem is NOT a narcotic and has NO addiction potential (unless it's psychological). The half-life is about 4 hours, so it is completely out of your system in about that long.

    It is a schedule 3 drug, meaning that it has been banned in the US due to its abuse as "the date rape drug", aka, GHB.

    One reason to not "worry" about the date rape aspect is that you KNOW you are taking it! When it is abused, it's usually slipped into a drink and the woman who is raped never knew she had taken it.

    There are recipes all over the internet, which is another problem. Every "abusive" dose can be a different strength. The pharmacy the dispenses Xyrem (Sodium Oxybutrate) makes pharmaceutical grade medication. Every dose is the same and it is very precisely measured.

    The studies that my doctor has done show that Xyrem helps you get level THREE and FOUR sleep - the kind that most people with FM don't get.

    There shouldn't be any night-time eating because you should be sleeping! And you have to take it about 4 hours after your last meal..

    If it works for you, you will have energy (and libido!) again....but my preference would be more along the lines of Keith Urban.. :) Hey, it's workin' for Nicole Kidman!

    Good luck with it!

    - julie (is free!)

    She could've laid in bed for hours
    givin' misery the power
    but she didn't have time.. - Terri Clark
  11. AquariusGirl

    AquariusGirl New Member

    I've tried Ambien and Lunesta and Klonopin for sleep. I always wake up with what I call a sleep hangover--still feel really groggy for awhile in the morning and then it wears off.

    Does Xyrem do this too? What dosage does everyone take of it?
  12. Juloo

    Juloo Member

    ...is that only medical professionals who have been through the pharmacy's educational program are qualified to prescribe it. If your care-provider is interested, have them look at the Xyrem website and respond to it.
  13. Juloo

    Juloo Member

    The dosing is highly individual. It can take weeks and weeks to find the right dosing combination. I put 'combination' because generally Xyrem is taken twice in one night...first dose at bedtime, then second dose about three hours later.

    At first that sounded counter-intuitive to me, because if you're having sleep problems, who in their right mind would want to set an alarm to wake themselves up in the middle of the night! But the medicine is out of the system rather quickly, and the second dose actually allows the person to get to an even deeper level of sleep than on the first dose.

    As far as does it work...YES! When I was taking it, I took NO NAPS and didn't even think about being sleepy during the day. BUT...first, my insurance didn't pay for it (I have CFS/FM, not 'narcolepsy w/cataplexy') and it is quite expensive...especially because I required such a high dose in the end...and second, the dose I needed to sleep right was way too close to the dose my stomach rebelled against. So I'm on Ambien now. I stay asleep, and I'm okay, but it's no Xyrem!
  14. TXFMmom

    TXFMmom New Member

    Xyrem helps narcoleptics because they do not get into the proper depths of sleep, and that leaves them with excessive daytime drowsiness, and some suffer from sudden collapses or catoplexy from it.

    HOWEVER, BY PROPERLY PHASING THEIR SLEEP, XYREM GETS THEIR SLEEP RHYTHMS TIMED SO THE EXCESSIVE DROWSINESS DISAPPEARS.

    At first it was only listed on label for narcoleptics with catoplexy. NOW, IT IS ALSO LISTED FOR THOSE WITH EXCESSIVE DROWSINESS, BUT THEY DO NOT HAVE TO HAVE CATOPLEXY.

    Those people have virtually the same sleep rhythm disruptions as do many of us. ALMOST IDENTICAL IN FACT.

    Therefore, by having your sleep doc compare your sleep lab to those of a narcoleptic, that can be submitted to insurance companies and used to aggressively get them to pay for it.

    Once you put the information in their FACE AND SEND THEM A LETTER TO THAT EFFECT, AND SUGGEST THAT YOU SHALL APPEAL IT AND GET AN ATTORNEY, IF NECESSARY, THEY USUALLY COME AROUND.

    Remember, there are only a few docs in the country licensed to prescribe the stuff, so you have to find one.
  15. forfink

    forfink New Member

    After reading about it on the internet it seems like a very scarey drug. Xyrem. Not sure I would want to take it.

    Have been taking a low dose of Provigil every day. Helps to take away the horrible morning fatigue. My mind is much clearer, takes away the fibro fog. Very expensive though, unfortunately.
  16. mrdad

    mrdad New Member


    Thanks Julie for the information!! I've learned so much from my new knowlegable and helpful friends in the short period of time I've been on this site!! I think there are some encouraging signs that help may be in the works for all of us soon. Let's think positive thoughts! Wishing you a restful evening, MRDAD
  17. gladone

    gladone New Member

    I hate to be the person to sound negative and burst your bubble. But, I read in your post that you don't have insurance.

    I realize that I do not know your background but unless money is no object for you than this medication is out of reach due to it's cost.

    I too was RX'ed this med via my doc who has done studies on this med. I have to say, I'm lucky to have very good insurance, non the less my request was turned down. This was due to it's use being considered off label as I do not have narcolepsy.

    Now here is the shocking part...........one months cost for this medicine w/o insurance (as told to me by the rep. of the pharmacy by phone).

    $635.00 per month.........

    that's about $7600.00 a year out of pocket.

    So, I can tell you that due to the cost factor I'm not on this medicine.

    I just wanted to be honest with you so you won't get your hopes up over this wonder drug. All we can do is hope the FDA will approve it for FM/CFS so we can all afford it.

    Hugs,
    Gladone



  18. julieisfree05

    julieisfree05 New Member

    You are SO welcome for the information!

    I've been active on the FM/CFS internet community since '93 and I've learned much of what I know from others who helped me when I was a "newbie" (and of course, my amazing doctors!). After realizing how much help I received, I vowed that I would do whatever I could to help others whenever I could.

    The Xyrem has been like a miracle for me, but I KNOW that nothing works for everyone. I'm just trying to get the word out that this medication is doing amazing things for many other people with these illnesses.

    Regarding how tightly controlled this medication is:

    Your doctor must be in Orphan's database, they must prove that they understand how to prescribe it, and that they have patients who need it. Since it is so tightly controlled, you do have to find a doctor who is willing to get educated about it and do the necessary paperwork for a schedule three medication.

    Thanks for the kind wishes! I've been off of the Xyrem for more than four months with no sign of the FM/CFS symptoms returning! It is possible that if you get enough good sleep, your body will begin to heal and you will not need it forever. This is not common, but it has been known to happen!

    Best to you!

    - julie (is free!)

    What you're really needin'
    when your soul is bleedin'
    is the kindness of strangers... - Radney Foster
    [This Message was Edited on 06/14/2006]
  19. julieisfree05

    julieisfree05 New Member

    I was afraid to try Xyrem for more than a year. My neurologist finally convinced me to try it and I regret that I didn't do it when my rheumy first recommended it.

    Like any medication, Xyrem can be abused, and that's the primary reason that I was reluctant to try it. Also, the "stigma" of taking GHB was something I didn't want to deal with.

    Once I learned about the studies with FM patients and with the encouragement of my doctors, I decided to try it - and I would do it again.

    I'm certainly not saying that it is right for everyone!

    I'm just sharing my experience and what I've learned so that others are aware that it is a treatment option.

    I hope you find what works for YOU!

    - julie (is free!)

    I'm through
    with doubt
    there's nothing left for me
    to figure out
    I've paid
    a price
    and I'll keep paying it.. - The Dixie Chicks
  20. wildflowers2

    wildflowers2 New Member

    Hey stage 2,3,4, 7...sleep I was close...giggling...

    Thank's for your post though. I guess I was half in a

    'fibro funk' my word whne I tried to explain what this crap is.

    Like they care anyway.....*laughing*

    Good, Doc said it should keep me asleep for 4 hrs and
    when I get up take it and go back to bed.

    many years ago I bought a 2 piece bathing suit when I was in Hawaii....(ok it was 20 yrs ago ) And said....

    one day I am going to get my________into it.

    I do my walking everyday and try todo gardening. Then die the next few days!!!

    Ain't life grand.

    It has taken me a year to realize that I am NOT wonder woman and cant do 50 million things at once.

    What is important to me today I say........and set my timer.







    wildflowers2........