Xyrem side effects may be dramatically underreported

Index Support Center Forums Treating Narcolepsy Xyrem side effects may be dramatically underreported

This topic contains 33 replies, has 13 voices, and was last updated by Sooty 3 weeks, 4 days ago. This post has been viewed 6482 times

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  • #12208
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    Sooty
    Participant
    @sooty

    When I began taking Xyrem a few years ago I could barely find anything online about the side effects I was having so it makes me feel better in a way to read this thread.

    From the very first morning after taking it, I felt like I’d been given an extremely large stimulant dose. I woke up tachycardic (140BPM for weeks until it leveled out through the use of beta blockers), sweating, anxious, hypertensive, yet still exhausted. Saw a cardiologist and he had no explanation.

    I stuck with it like the rest of you did because I was instructed to do so by my doctor, the helpline nurses, and the pharmacists. It’s disappointing that the pharmacists don’t seem knowledgeable as to the mechanism of action of Xyrem or any of the published studies. They’re supposed to be experts on pharmacology.

    I was on Xyrem for about three years and have been off of it for one year. It seems to have permanently changed my neurochemistry; I am now seriously resistant to GABAergic drugs and very sensitive to stimulants. Also, I was previously using marijuana to great effect to help me with my chronic pain, but literally the morning after sleeping on Xyrem my reaction to marijuana completely changed. I have this lingering side effect that I call “fuzziness.” It’s almost like this inability for my brain to relax, and it’s actually more difficult to sleep now than it was before I ever took Xyrem, plus I no longer have the benefit of being able to use marijuana!

    This drug is extremely powerful and there is not enough research despite it being very old. It seems as though Jazz did a couple research studies, slapped a sodium salt onto GHB, and began charging six figures a year for it since narcoleptics have so few treatment options.

    I hope the length of this post doesn’t discourage any of you. I’d like to hear your thoughts, especially Jason. I wish I’d never taken Xyrem.

    #12210
    Ferret
    Ferret
    Moderator
    @ferret

    @sooty Thanks for your comments. What is really scary is that on October, 18th of 2018, Xyrem was given approval by the FDA for pediatric patients of N with C. How scary is that? Xyrem on an undeveloped brain.
    I wouldn’t even try it in 2002 when it first came out and it was SIGNIFICANTLY CHEAPER at that time.
    It’s Jazz Pharmaceuticals cash cow and now they’re plying it on children. Probably because a generic is now available.

    #12213
    Ferret
    Ferret
    Moderator
    @ferret

    @sooty Thanks for your comments. What is really scary is that on October, 18th of 2018, Xyrem was given approval by the FDA for pediatric patients of N with C. How scary is that? Xyrem on an undeveloped brain.
    I wouldn’t even try it in 2002 when it first came out and it was SIGNIFICANTLY CHEAPER at that time.
    It’s Jazz Pharmaceuticals cash cow and now they’re plying it on children. Probably because a generic is now available.

    #12216
    Avatar
    Sooty
    Participant
    @sooty

    Wow, that is seriously wrong and irresponsible. They’re so greedy and the government is not doing what it should to protect its people.

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