Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Xyrem Availability By Prescription in the U.S............Questions

Discussion in 'General Treatment' started by MCRobbie, Jul 19, 2014.

  1. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    Hello All,

    I have a few questions I would love to ask the Community on Xyrem Availability in the U.S.

    It appears that many CFS docs (Peterson? Klimas? and others) may be prescribing Xyrem to some of their patients with success.

    My questions are:

    How easy is it for a Dr. to prescribe this medication when it is only FDA approved for Narcolepsy and only distributed by one Pharmaceutical Company (Jazz Pharmaceuticals)? Are some CFS docs able to prescribe this medicine easily for an off label diagnosis (if not diagnosed with Narcolepsy) such as CFS/ME, Fibromyalgia, or Insomnia?

    Is anyone having success getting it prescribed through their CFS docs or even PCP's or other specialists?

    It appears as if, if you can get a prescription written and successfully filled, and if your insurance covers it the co pay is only $35.00 or so . How many insurance companies are covering Xyrem and are they covering it only for a diagnosis of Narcolepsy? Is Medicare covering it and again only for a Narcolepsy diagnosis?

    It sounds as if you either get it covered and then can try it or you cant try it seeing as the cost of the drug is so exorbitant (which is of course ridiculous knowing that it could be purchased over the counter so many years ago for pennies on the dollar).

    If anyone can provide insight on these questions Id be grateful.

    Thank you.
     
    heapsreal likes this.
  2. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,311
    Likes:
    6,973
    USA
    Hi MC, I am glad you asked this question. My doc prescribed it. HE is a CFS doc but not Klimas, etc. He had no idea that I couldn't get it at CVS. He gave me a prescription for it and I went to CVS. Found out that is not the way to go. I got in touch with Jazz. I did all that you have to do. It's an interview that lasts for 3 weeks. I had to pass the test so to speak.

    My doctor also had to pass the test in order to prescribe it to me. He did. He claimed I have narcolepsy. Also, CFS. Narcolepsy is what will get you approved.

    I paid $35. Yes, it's expensive and I don't have prescription coverage. They look into how much money you make, etc. They do serious research on you.

    I took it once and had negative effects.

    A nurse called me the other day to talk about. They have actually called me 3 times this week. To check on me.

    Here's what nurse said......"Xyrem is a bandaid. If you stop taking it...you will go back to being sick. It only helps you sleep during the time you are on it. With CFS, Narcolepsy, Fibro, etc....it only works as long as you take it." This was the best part......she said, "Many people can't handle the side effects. Most people take it for awhile and then it turns on them, so don't feel bad it you can't take it." INTERESTING.

    As usual, Klimas and Peterson are looking at things with a..."let's try this now and it will help people but it's not a fix....really." I am not a real fan of any of these doc's because they try a lot of stuff that only works for a bit and even though that can be instant gratification, I really wish for something that would stick. Let's get to the bottom of why we are sick people...no more band-aids.

    If you can find a doctor who will prescribe it, go through the hoops that Jazz wants you to go through..or the doc to go through...try it. But most doc's want no part. It's a lot of work and they have to also be in touch with the doc (Jazz calls doc) to check in on you and have his input. They want to make sure you are not abusing it and also make sure you really need it.

    I am thinking of trying it again, but the side effects are huge and especially for those with CFS. We have enough to tackle. The nurse told me on the phone, "It's totally normal to urinate a lot with this medicine because it has diuretic effects. Also, people sweat a lot. So, if you take it....keep electrolytes coming in. Also, it's normal for a bit to feel like you are floating when you walk. This drug affects the central nervous system." I felt like I had an out of body experience on it. Like I was floating while walking. Not exactly a good time.

    There are a lot of cons and I think Klimas and all docs should try this med before they prescribe it. If you have sensitivities, food intolerances, are seriously sick and need to eat every few hours, think twice.

    You lose your appetite on it...this is so common and many vomit on it due to the high salt content. It dehydrates you and you can't take it if you ate before taking it. The rules are endless. If you eat less that 2.5 hours before taking it, it's efficacy is less than 60%. I don't know about anyone else, but I need to have protein before I go to bed. No can do. Think of drinking down some baking soda in water. It tastes just like that. Like taking baking soda. It is gross. It's not a pill. It's something you drink. Then, you wake up between 2.5 hours or 4 hours later and drink another thing down of it again...whether you want to or not...you will wake up because once it wears off...it's anesthesia like affects...you wake up like BAM.

    I have been sick ever since I tried it. They say it leaves system in 4 hours. NOPE.
     
    Last edited: Jul 19, 2014
  3. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    Thanks MT for your thoughts. Its great to get a little insight as to how it works. Its a shame that Jazz makes the process so daunting for patient and prescribing Dr. and want to 'follow' you and your Dr.. How Jazz got the sole rights to distribute and regulate a medication that was once an over the counter nutritional supplement and then charge tens of thousands of dollars for it is I am sure an interesting story.

    As to your response to it, I do think, if one were to go back in time when it was readily available as a supplement and took a poll of people in good health who took it you would find that it wasn't so terribly frightening. We are sick and many of us have profound responses to medications supplements and food that are not the responses encountered by healthy persons. IMO Jazz and the Federal Govt has intentionally tried to scare the pants off of people about this 'drug' so Jazz can continue to have sole ownership of its distribution rights and so no one will try to make the drug at home at 1/1000 th of the cost. "Its a potentially very dangerous drug!" they say "and we know how to administer it because we are now somehow the experts even though we are only a pharmaceutical company that makes it" not a doctor or treating institution. Its awful that you had such a terrible experience but it doesn't necessarily mean it is an extremely dangerous or high side effect drug for everyone, only that we CFS sufferers can respond very poorly to a lot of things.

    It stinks that you responded to it so poorly.
     
    Last edited: Jul 19, 2014
  4. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,311
    Likes:
    6,973
    USA
    I wonder as a supplement if there were as many rules to it as there are now? I wonder....could people drink on it years ago or eat? You are not allowed to at all and even though I don't drink, I don't like the fact that they remind you over and over how you can't have anything to drink or any kind of opiate or Klonopin or Ativan. No can do. But, I am on Klonopin and I have been on it for 24 years...I can't not take it. It's just too much CNS depressing going on to take other meds.

    Yet, when I said I had horrible anxiety on it, the pharmacist said..."Well, you could take anti anxiety meds like Ativan or Xanax...."Um, that's all you have been telling me that I can't take!! WHAT?"

    They really do scare the pants off of you and I told the nurse, pharmacist and this other guy...God knows who he was,,,,who called me the other day, "You should just put a skull and crossbones on this medicine." I said that. It's true. They are so all over you and the DVD, the pamphlets, all of it is just too much negative info. It doesn't say "Side effects" on it....it says, "Serious side effects and common ones." That's weird.

    I think many may have benefits, it's just for how long? If you go off of it...you won't anymore and it's very hard IMO to do it.

    I am very sensitive so not everyone would have my side effects, but I do feel that after being on here for several years and reading so many people's experiences on here....that many would not be able to handle it. But, it's worth trying. I am glad I did regardless of my reaction. I wish I had a better outcome. Having the pain go away for one day was wonderful. The other stuff, not so much. At least I know.

    I would like to add, that it seems like men do far better on it than women. I have noticed that in my research. Women are funky. We have hormones and Xyrem also brings on hot flashes or sweating. It bothers both sexes, but women a whole lot more.
     
    Last edited: Jul 19, 2014
  5. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    It really is remarkable the whole process you describe with Jazz once you initiate it. Thanks for sharing your experience. I think youre right, I think many of us might respond poorly to it. It would just be nice if people were more easily able to try it who wanted to.
     
  6. Misfit Toy

    Misfit Toy Senior Member

    Messages:
    3,311
    Likes:
    6,973
    USA
    MC....when I say they interview you for 3 weeks, I mean they call you and interview you several times. They ask you what you have, what is the reason for taking, what meds are you on...do you take drugs..it's a lot of standard questions. They make sure you are a proper candidate. It's not horrible, but inconvenient. The calls happen all times of day, but you can always call them back.

    This goes for my doc, too. They called him.

    I am not on a lot of meds. Klonopin was the biggest red flag to them but also Fentanyl, but I don't take that everyday.

    The financial aspect (interview) was not really hard. It's a chafe, but it's not horrible. You just have to take 20 minutes out of your day for a few weeks, a few times a week to handle the questions, etc.

    I started realizing..."wow, this is really a process." And, you also are made very aware that this medicine is heavily controlled.

    Even now that I am not taking it...they will call me next week to see how I am. I only have a certain number of weeks that I can't take it and then they want me to throw it down the drain, pronto. I have to cross out what the medicine is on the bottle in black and throw it out and make sure no one can see what the medicine is. So, in a way, I feel like I am being forced to try it again soon, but I am not ready.
     
  7. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    Thanks for the details. They are very helpful.
     
  8. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,615
    My CFS doctor in NY- dr. Enlander prescribed it for me. This was about 7 years ago. It seemed like a pretty simple process at the time.
     
  9. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    Thanks for that Nielk. Interesting to know that Dr Enlander has/does prescribe it. That's encouraging as I saw him a couple of times many years ago and have been thinking of checking in with him.
     
  10. john66

    john66 Senior Member

    Messages:
    156
    Likes:
    140
    Hi McR, I agree wtih your thoughts-I think someone who started Jazz got one helluva political payoff. All drugs are dangerous if misused. Overdoses of aspirin and tylenol cause many deaths per year and no one is setting up multi layered defense systems against their abuse! When I first tryed Xyrem, I was so scared, I think I psyched myself out of its workiing properly. When I went back to Enlander, my BP was very high due to the salt content and general CFS issues, parking in NYC etc. It is the best sleep drug in my opinion-you get better sleep for the two three hour sessions I was getting than on any other med I took. For me it is too expensive and too much of a hassle to stay on it. I am just done with the doctor merry go round.
     
  11. MCRobbie

    MCRobbie Senior Member

    Messages:
    127
    Likes:
    179
    Im feeling the desire to get off the merry go round myself John! Appreciate your thoughts on it.
     

See more popular forum discussions.

Share This Page