Index Support Center Forums Treating Narcolepsy Anyone trying Xywav?

  • This topic has 4 replies, 4 voices, and was last updated 4 weeks, 1 day ago by mobilealguy. This post has been viewed 839 times
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  • #17928
    Avatarmobilealguy
    Participant

    Anyone going to be trying Xywav? For those not familiar, Xywav is basically a low sodium version of Xyrem. It’s still oxybate, but instead of pulling salts from sodium, it pulls it from magnesium, calcium, and potassium. As a result it contains 92% less sodium than Xyrem. Other than that it appears to be very similar to Xyrem with similar dosing instructions and similar side effects. The coupon program is still a thing, but instead your out of pocket totaling $35, it makes your out of pocket total $5. I’m going to try it. I’m hoping it works better than Xyrem and that less sodium makes some of my side effects go away. If my side effects do go away, I’m hoping to be able to tritate back up to hopefully get more sleep. I’ve had to lower my Xyrem amount due to side effects and I’m back to not getting enough sleep and being tired during the day. Xywav has been out for about 2 weeks my next shipment will be Xywav instead of Xyrem. Anyone plan on trying Xywav?

    #17938
    FerretFerret
    Moderator

    I’m not going to try it but I wish you success! Please keep us informed as to your progress.

    #21873
    Avatarlazybug
    Participant

    How is xywav working?

    #23137
    Avatarfmustang1981
    Participant

    I tried to fight narcolepsy with Xywav, but it did not lead to a satisfactory result. Unfortunately, doctors can not yet give a drug that can help with narcolepsy. Probably the best thing to do is to try to align the sleep mode. I have tried many methods, and I can say that the best is the CBD from PureHempFarms, which helped me get back to sleep at night. It is relaxing, but it is worth remembering that I also actively played sports before going to bed, tiring my body. Perhaps this approach will be individual for everyone. How do you handle it?

    #23916
    Avatarmobilealguy
    Participant

    I had a PM asking about my Xywav experience so far, so I borrowed most of my response to add here for anyone else that was curious. I love the fact that Xywav is 92% less sodium than Xyrem. My urine isn’t as dark in the morning as it would be when taking Xyrem since I’m not having to filter out all that sodium. That much repeated sodium with Xyrem just seems terrible to me long term. I had side effects with Xyrem at 4.50 grams twice nightly and ended up dialing it back all the way to 2.75g. With Xywav I’m at the same 2.75 dose. I’m not sure if it’s the dosage or Xywav (because I switched to Xywav shortly after adjusting my dose to 2.75g) but I am not getting as much sleep. I’m tired again during the day but it’s not as debilitating as it would be without Xywav.

    I’m also still trying figure the best timing with Xywav. With Xyrem I had my routine down and needed to take the second dose 2.5 hours after the first. With Xywav I haven’t found my magic numbers yet (dosage or timing). I’ve apparently turned off my alarm and gone back to sleep without taking my second dose quite a bit and I only occasionally did that with Xyrem. I was hoping I would eventually be able to tritate back up to a higher dose to get more sleep, but I’m not sure I’ll be able to do that. When I’ve increased my dose a little here or there it seems I’d have the same side effects that manifested with Xyrem. Anyone else try it yet?

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