Just got Xyrem price, $847 for one month

Discussion in 'Fibromyalgia Main Forum' started by TwinMa, Mar 24, 2006.

  1. TwinMa

    TwinMa New Member

    The FFC doc suggested I look into Xyrem for sleep. My insurance denied coverage, so I would have to pay full price, which is $847 for a month!! OUCH!!!!

    That is for 3 bottles. Are other people paying that much?

    I think I'll stick with the Shake and my Ambien!
    [This Message was Edited on 03/24/2006]
  2. Juloo

    Juloo Member

    My insurance didn't pay, either.

    One of the reasons it is so high is that Orphan Med. is required to have a program in place that trains both the physicians and the patients. Those costs also cover the material that patients are required to view before being prescribed. Pharmacists are available by phone, and I took advantage of that when I could, because I had a lot of questions.

    If the FDA would accept that it is good for more than just 'narcolepsy w/catoplexy', more people would be covered by insurance, and the price would go down significantly. This is definitely one instance where the (FDA-created) monopoly has driven this medicine -- and an effective one for many, many people who have had little luck with other sleeping meds -- beyond the ability to pay of just about anyone.

    I was hoping that I'd get lucky and be sensitive enough to the Xyrem that I'd need a small dose each night, and maybe only one instead of both night doses. I didn't! As luck would have it, I needed just about the highest normal dose, twice a night.

    In the end, although I had many misgivings about the money, the quality of sleep was well worth it (this was my husband's opinion based on the fact that I did not nap at ALL during the days I took it!) -- that is, until my sensitive stomach decided that it was DONE with Xyrem, and I had to give it up.

    I'm thinking I paid about $260 a bottle. I don't remember if that was with or without shipping. At my peak dose of 9mL twice a night (18mL a day), that's one bottle every ten days. So 3 X $260....yes, about $800 a month, plus shipping, depending on how much you get at once.
  3. bettydroop

    bettydroop New Member

    I know! My husband just told me after doing taxes... that we spent 16,000 dollars in meds last year.

    And we dont have money. I think if we WERE rich or something - of course it would be WAY WAY too much... but at least you dont go into debt to feel half way decent.

    Now days, you have to have money for your "health challenges" (trying to be positive here for terms)and its not right! Its very wrong.

    I DO know that here are people out there that have it MUCH worse than I, I am just giving an example. I dont know what one would do if you didnt have a credit card. I hope for change.

    Sorry you couldnt get what you though tmight help you-
  4. livin4him

    livin4him New Member

    They sent me an assistance application when I was denied through my insurance. But it was very personal questionnaire and it was so long, at the time, just no energy to deal with it.

    If you are interested in that you could call them and ask about their assistance program.

    By the way, I still need to get those recipes to you. Have been really sick with gallbladder this week. Take care.
  5. MaryCecelia

    MaryCecelia New Member

    That is awful!! Now I feel guilty because I just started Xyrem 2 weeks ago and paid $90 (co-pay) for 2 bottles. I have Anthem insurance, and my doctor said he's had pretty good luck with them. He did have to write a letter convincing the insurance of my need for Xyrem due to alpha wave sleep intrusion from my fibro. Has your dr. written a letter, or do you have insurance?

    I'm so sorry to hear about that because I do have some hope of it helping me, eventually. It's unreal and disgraceful that these companies get away with this.
  6. TwinMa

    TwinMa New Member

    I know, I couldn't believe the cost, either!

    I'm really not that disappointed, because I wasn't considering it as some sort of last ditch effort to get sleep. It was simply an option. Now that I know the cost, it is NOT an option. I'm OK with that.

    For anyone who can get Xyrem at a reasonable cost, More power to you! Absolutely DO NOT FEEL GUILTY! I hope this drug DOES work for some people and that those people can get it at an affordable price.

    I'm just not one of them, so I will keep looking at other options. The shake is helping me, and Ambien is helping.

    I still have other options that I haven't tapped into yet: melatonin, L-Tryptophan, Rozerem, GABA, etc. There is always something else to try.

    My sleep is better than it used to be, but not as good as I would like it to be. One of my ongoing battles.

    Thanks for all your input!

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