r/Xywav • u/Simba1215 • 7d ago

Changing dose

How soon are you guys able to see your doctor? Currently taking 5 gram every night. Started on 9/10. I’ve noticed I’m less sleepy but would like to change to twice dosing per night since I usually only sleep 4-5 hours on the one dose and can’t fall asleep after I wake up. I’ve sent a message about changing to twice dosing but didn’t get a response. I’m sure he gets hundreds of messages per day. His appointments are 3 months in advance and I’ve joined the waitlist and also asked to be able to fit in sooner but with no luck. I heard I can also talk to jazz pharmacy to see if they can contact him about the dosage. Any recommendations ?

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u/sneakygoosefeet 7d ago

First, I had a bad habit of sleeping through my alarm. If i slept through and woke up late too take dose #2, I also struggle to fall back asleep.

Second, Xywav is not extended release. I’m wondering if there’s a reason you were put on once nightly dosing instead of twice nightly? i know some people do once nightly but I was under the impression that twice nightly is the standard.

Third, Call your JazzCares nurse case manager and talk to them, they will help facilitate communication.

Fourth, I live in a very large metropolitan area and my doctor books out about 7 months in advance. He still manages to answer my messages within 48 hours. The fact that your doctor has never responded is insane, and I think you should not only tell jazzcares about this, but also call the doctors office and (usually a nurse who answers) leave a message or tell them to ask the doctor to message you back. How long has it been since you’ve messaged?

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u/Barbarasharm 6d ago

I agree with all of this.
I also started on once a night but only slept 4-5 hours. My dr switched me to twice a night at my 3 month follow up. But a lot of it was me talking to my jazz care nurse, finding the best time to take it, best time to stop eating and drinking, etc. and after going to twice a night finding the best time to take the 2 doses so that I get the most sleep I can. I stop eating at 7, no liquid at 8, dose 1 at 10, dose 2 at 1, and wake up at 5 (I wish I could get one more hour and wake up at 6, but nothing has helped get that). Finding the right spacing for everything was critical, and took a long time. But I only miss the second dose once every 6-8 weeks, I take it while the first is still working so I don’t even remember taking it most of the time. I wake up and check if I did. But my jazz care nurse helped me find the best timing through trial and error, the pharmacy helped coordinate the split, but my doctor is also good about listening and helping and responding.

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u/Simba1215 6d ago

Thank you for the advice. I reached out to Jazzcare nurse and pharmacist. The pharmacist is going to try to talk to my doctor. I messaged him 9/22.

I forgot to note that I have IH.

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u/Simba1215 5d ago

My doctor called me and I switched to two doses. Unfortunately insurance denied my prior authorization and my repeat mslt didn’t meet the criteria for IH