i'm starting xyrem, any info would be helpful

Discussion in 'Fibromyalgia Main Forum' started by bakeman, Jun 14, 2009.

  1. bakeman

    bakeman New Member

    the pharmacy left a message on friday. i will call them monday. the need information to get the ball rolling. i don't have insurance so its going to be out of pocket.

    my prescription is for 2.25mg x 2. anybody know what they charge?

    what is going to take place during the phone call?

    thanks, bake
  2. cfsgeorge

    cfsgeorge New Member

    Do a search. I asked for patient feedbacks and there were some very good feedbacks and info on dosing. you should definitely dig it up. i think the post title was something like "Xyrem- phoenix rising." good luck!
  3. S-Elaine

    S-Elaine Member

    I was on Xyrem for approx. 6 months and it did not work for me.

    All of my doctor’s other patients, it worked for.

    My Insurance would not pay for it either and I believe it was approx. $220.00 (ish) per bottle.

    I was on such an extremely high dosage, because it just wasn’t working properly for me. You initially start on a low dosage & you doctor increases it from there.

    The Phone Call or the “Distributing Pharmacy” just wants to make sure it is going to a person who has a medical need. I’m not sure if you know Xyrem was removed from Pharmacies because it was being used as the “Date Rape Drug”.

    It does have a salty taste to it ----- well, and it never put me to sleep. My “rare & not common” side effect was Sleep Walking!

    Hopefully, the price has come down. Ask when you are on the phone.

    == Elaine
  4. agcgmom

    agcgmom New Member

    I have been taking xyrem for quite a while. I hope it works for you as well as it does for me. I looked at the packing slip when my prescription arrived last week and for 3 bottles, the slip indicated they bill my insurance $2260 (a new increase)for those 3 bottles. I wonder if they have a different cost for different or no insurance. I pay a $50 co-pay each month.
  5. bunnyrabs

    bunnyrabs New Member


    Xyrem is very expensive and its price has been going up all the time. It is insane!!!

    See the following threads. The narcolepsy patients are rebelling! On the one hand Xyrem has changed their lives; on the other hand it costs them more than a mortgage if they don't have insurance.



    [This Message was Edited on 06/15/2009]
  6. bunnyrabs

    bunnyrabs New Member

    agcgmom and jkennedy,

    Who do you have for insurance? It seems right now, depending on the insurance company, that Xyrem can be covered for fibromyalgia under a category of excessive daytime sleepiness (EDS) which is a more general category of sleep disorders which includes narcolepsy---so fibro patients can sort of slip Xyrem in there...or it is only covered for narcolepsy with cateplexy, or narcolepsy with or without cateplexy, and only for those strict categories and nothing else.

    Then there are some insurances that might cover it if you complain enough and after you have tried other sleep meds first. sigh...
    [This Message was Edited on 06/15/2009]
  7. agcgmom

    agcgmom New Member

    I have had BCBS PPO and now I have Humana PPO. My BCBS co-pay was higher. I do not know how it is coded by the Dr but I have never had any problems.
  8. gapsych

    gapsych New Member

    I had a friend who lived near me whom I met on the talkaboutsleep board. This was before I was diagnosed with FM and I actually had a diagnosis of Narcolepsy which has changed to FM/CFS.

    Last I heard she had just started Xyrem. Unfortunately, she moved away and we lost contact with each other.

    Her doctor restricted her driving to afternoons only when she started on the Xyrem, so any residual effects would be gong by the afternoon. Also no night driving.

    Do you still have to complete the course where you watch the videos before being able to get the drug?

    The med. was also shipped to her, which I found surprising for a controlled substance, but maybe the Xyrem was not as readily available then as this was around seven years ago.

    Her insurance covered part of the costs but her sleep doctor had to call the insurance company and explain her circumstances.

    How awful that the drug is so expensive.

  9. bunnyrabs

    bunnyrabs New Member


    I also have a Aetna PPO plan. I am surprised Aetna covered it for just EDS. Have you read Aetna's clinical policy bulletin for Xyrem? It states you must have a documented:

    A. Diagnosis of either excessive daytime sleepiness associated with narcolepsy OR
    cataplexy associated with narcolepsy OR
    B. Diagnosis of hypnagogic hallucinations OR
    C. Diagnosis of sleep paralysis

    I haven't been prescribed this medication, but I always assumed based on above criteria that Aetna would refuse to cover it. I do have EDS but no narcolepsy.
    [This Message was Edited on 06/15/2009]
  10. cfsgeorge

    cfsgeorge New Member

    Anybody know if Xyrem is covered under this plan for EDS or other CFS-related symptoms? It would be really helpful to know next time i see my PCP. thanks!
  11. moreinfoplease

    moreinfoplease New Member

    I am taking it and it is helping some (some energy in the am, no miracle cure), with no side effects.

    I wanted to respond to the question about anthem blue cross coverage.

    I have anthem blue cross HMO and they are covering the xyrem with just a $25 copay per month. (I was very surprised).

    Doctors have to register (not sure if that is the right word?) before they can prescribe xyrem, and it is delivered by mail from one central pharmacy.
  12. cfsgeorge

    cfsgeorge New Member

    I have anthem ppo which only covers 60% of prescriptions so you are very lucky with the $25 copay. I hear the cost of xyrem/ghb has gone up to around $1500-$2000/month now. 10years ago you could buy pure GHB from GNC for $20/bottle. This is a very inexpensive drug to make.

    Can i ask what your doctor diagnosed you with to get approval for xyrem from anthem? thanks for your help.
  13. bakeman

    bakeman New Member

    i took xyrem for the first time last night. the dr started me on a low dose. i slept for a total of 5 hours. i feel better than i normally would for only 5 hours of sleep so i am hopeful. my sleep study showed disrupted sleep 18 times per hour (not apnea) with only 5 hours of sleep per night. the dose was 2.25 mg x 2. fyi: one bottle is approx $650. most people need 2-4 bottles per month.

  14. heapsreal

    heapsreal New Member

    I understand xyrem didnt work for you. Wondering what sleep meds do work for you is xyrem doesnt has its suppose to be 'the ' sleep med of all sleep meds.
  15. S-Elaine

    S-Elaine Member


    Before I took Xyrem, I had extremely high hopes.

    My doctor continued to increase the dosage and then said it was just way too expensive and not working properly for me.

    I even called the company who makes it and they never even did a “Test Study” on a patient with the dosage level I was on. They agreed with my doctor, apparently Xyrem was not successful for me. While it can help and work for many, it just didn’t work for me personally.

    My Specialist also has a Degree is “Sleep Disorders”, so we went through various different sleep medications and then he started to do some combining of medications.

    It took him 1 and ½ years to finally fix my sleep!

    The reason why I do not post what specifically I take for sleep is only because my Specialist would never prescribe the same combination to any other patient.

    While the combination is 100% safe, no other patient of his had such a bad sleep disorder as I do.

    What I can suggest is to ask your doctor to let you take ----- the OLDER Sleep Medications that have been on the market for 10 plus years.

    My Specialist has found them to be more effective on his patients and he has never once had to increase my dosage.

    Perhaps you can ask you doctor about either Prosom or Halcion.

    Let your doctor decide what one they will try.

    I also do add in vitamins / supplements for sleep at night & I get them from ProHealth.

    == FibroSleep
    == GABA
    == ZMA
    == Valerian
    == Melatonin

    With the help of my doctor, we introduced ONLY 1 supplement at a time.

    Hopefully, my reply is helpful to you.

    Take care,
    == Elaine
  16. cfsgeorge

    cfsgeorge New Member

    Let us know good or bad with your xyrem experience. 2.25mgx2 is the starting dose and moves up to 3.0gx2 and 4.5gx2 as needed. The cost has really skyrocketed in the last few years. Just to think that $650 bottle of Xyrem/GHB was only $20 at your local GNC +12years ago. Anyhow, good luck and sweet dreams!
  17. heapsreal

    heapsreal New Member

    Im going through the process now of trying to sort sleep out. Over the years now have tried everything, almost. XYrem is not available to my knowledge in australia and if it was probably out of my price range. Now looking into seroquel. At the moment rotate between a few different meds as i build a tolerance quickly. My doc said he has a few hardcore insomniacs who have responded well to seroquel and i have left this as my last option. Between cfs and 20 years of shift work i think i have broken my sleep thingy lol, if that makes sense. Thanks for the reply, will look into those other meds too. I have found here sleep specialist are mainly interested in treating sleep apnea etc, if all that is fine and you have problems getting to sleep and or getting quality sleep and depression is rules out, you have a hard time finding a doc to treat you. Luckily i have found a good GP who understands.

    Thanks again
  18. Waynesrhythm

    Waynesrhythm Member

    I started using micro-current therapy (Alpha-Stim) about a year ago and it has significantly helped my sleep.

    Just recently, I discovered that a local health club had a far infrared (FIR) sauna, and I have been doing these saunas for about two weeks now. I had heard that these FIR saunas can improve sleep, and it has turned out to be true for me.

    I'm still not sleeping what I would consider "normally", but I am able to manage approx. 8 hours a night of somewhat broken sleep; much better than before I added these two modalities.

    Regards, Wayne
  19. moreinfoplease

    moreinfoplease New Member

    Sorry, I have not checked in here regularly recently and missed your question.

    In 2004 I had a sleep study done that showed 91 instances of unexplained arrousals.

    In 2008 I had another sleep study done that diagnosed Alpha/Delta sleep (alpha intrusions) as well as "difficulty initiating and maintaining sleep".

    I think that the 2004 unexplained arrousals were probably alpha intrusions. I am not sure why I was not diagnosed with alpha/delta sleep disorder in 2004. The neurologist said that they didn't have the ability to test for it as well then. Not sure it that is accurate.

    After getting the diagnosis of alpha delta sleep, the neurologist wanted to try other sleep meds before trying xyrem. I tried neurontin, which I had a very bad reaction to. I got fed up with the neurologist (long waits for appointments, wasn't prescribing xyrem though he had indicated he would previosly, was arrogant).

    So, my psychiatrist offered to prescribe the xyrem. I don't acctually know what she wrote down on the form to get insurance approval. I am assuming that she put alpha delta sleep, since the other things she is treating (anxeity and depression) would not get xyrem coverage.

    Hope that helps.

    Have you had a sleep study? If not, that might be the way to go. I had to get a referral to a neurologist in order to get a sleep study done.
  20. bakeman

    bakeman New Member

    a xyrem update, I'm on 3gx2. i'm getting 5.5 hours of sleep a night but it is good quality. i'm actually dreaming fore once. my energy and clarity is so much better. it seems like i'm getting my life back. still to early to say for sure but so good so far.