ZYREM....What I have been told by my Doc about cost ect.

Discussion in 'Fibromyalgia Main Forum' started by gladone, May 7, 2006.

  1. gladone

    gladone New Member

    To all who may be intrested:

    I am new to this site and dd but I have been rx'd zyrem. So, I thought I would share what I know about it.

    Zyrem is a highly controled narcolepsy drug. Its use in treatment of CFS & FM is considered off label (not approuved by FDA for this illness).

    Zyrem is commenly known in the drug world as GHB. Prior missuse of this drug has made it now highly controlled. Due to this, there is only one pharmacy in the US where this medication can be purchased and few doctors are willing to perscribe it (due to it being off label).

    My own experience was that I had to have a sleep study done to have my doctor rule out any other problems prior to him rx'ing same. I have been told that due to the control issues surrounding zyrem it could take up to one month for me to finaly receive my first dose.

    As for cost, because it is an off label use (not ok'ed by FDA for us) most insurance companies will not cover the RX. In that case, the cost without insurance could be as much as $300.00 a month.

    The good news is that my doc has treated 5-6 other FM/CFS people and all have showed glowing results. Virtually all have fully recovered from there major problems with the occasional set back or flare up.

    My doc is hopeful that within the next several years zyrem will be ok'ed for use with FM & CFS and then would be more accesible to all who could benifit from its use.

    I hope this has been helpfull......maybe you can take this information and share it with your doc and see what he/she thinks. Maybe you can benifit from it too!!!

    Have a great day!


    P/S when I get my RX I'll keep the site posted on how it's going.
  2. Juloo

    Juloo Member

    When I was taking it, it was over $500 for two bottles, and that didn't last me the whole month.

    Although I had a stomach problem with it and had to discontinue it, I agree that, when it worked, it worked better than anything else I'd ever taken.

    It's such a shame that the FDA and the insurance companies are holding up what can be a help to so many.
  3. Marta608

    Marta608 Member

    I've been curious about this drug since I heard about it from a nurse friend of mine and then again here. She said the drug rep had come into the doctor's office (he's a psychiatrist specializing in drug abuse and rehab) where she works and my friend had talked to her about it. My friend asked about it for CFS and was told that they expect it to be approved for that as time passes.

    If the reps are out, could be the drug will soon be more available. The only drawback the rep gave was that it had to be taken in two doses, one at bedtime and one in the middle of the night. No problem. I'm awake then anyway. lol

    Keep us posted, OK?
  4. place

    place New Member

    The more I read the more I think we need to get some sleep. As I think back, all my weird pains started when I moved in with my (now) husband. I was not sleeping well.

    I would sit there so tired I call my mom and say, I can't do this don't get any sleep. Then within two months I got sinus issues.

    Please keep us posted!
  5. julieisfree05

    julieisfree05 New Member

    Hi Gladeone,

    I started Xyrem about a year ago and my FM/CFS symptoms are virtually gone!

    A couple of things:

    1. Xyrem is a METABOLITE of GHB (Gamma Hydroxy Butrate). It's generic name is SODIUM OXYBUTRATE. It's related closely enough to GHB to be considered the same thing though - that's why it's so tightly controlled.

    2. Xyrem is a "schedule 3" drug. That means that you can't get it at a regular pharmacy. "Orphan Pharmaceuticals" is the only pharmacy in the US that dispenses it. In order to get a prescription, your doctor must be in their database. To get in the database, the doctor has to prove that he/she had patients who need it, and that he/she knows how to prescribe it. My neuro and rheumy are both in their database. This is another reason that many doctors won't even consider prescribing it. There is a boatload of paperwork that also goes with prescribing it.

    3. There have been several studies using Xyrem in FM patients and all of them have show very encouraging results. My rheumy has done at least one, and is currently involved in the on-going multi-center study that is being sponsored by Orphan. My neurologist has been using it for FM patients for several years and has had miraculous results. He's told me that it's the closest thing to a "cure" that he's ever seen!

    4. My rheumy told me that the FDA is very likely to approve Xyrem for FM in the near future, based on the positive results of the studies. If that happens, it will be much easier for FM patients to get insurance to pay for it. You can argue with your insurance NOW regarding payment, using the FM/Xyrem studies. Heck, everything else we take is used off label! If they'll pay for Prozac, why not Xyrem?

    5. See my posts "Xyrem saved my life" for more details about my personal experience with it. If you have any questions, just post them and I'll try to help with my experience.


    julie (is free!)

    It's a mighty big word
    for such a small man.. - Rebecca Lynn Howard
    [This Message was Edited on 05/08/2006]

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