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Xyrem To Xywave

A MyNarcolepsyTeam Member asked a question 💭
Rutledge, GA

Has anyone changed from xyrem to xywave? What is your experience with either of them? Both have changed the taste, and what foods I eat, has that happened to you?

November 25, 2021
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A MyNarcolepsyTeam Member

I'm now taking Sunosi as well. It is expensive but it is worth it, its the only way I can function.

November 30, 2021
A MyNarcolepsyTeam Member

My sleep doc is big into clinical trials, so I've been in a few. I was in the one for Xyrem, in 2000, I think. (It was approved in July 2002.) When you're in a clinical trial, if the drug is finally approved, you usually get it free for a year. I did with Xyrem, and after that I've gotten outside assistance to supplement my Medicare Part D, so I've never had a copay. But soon after starting Xyrem, the sodium caused my BP to run high, so I had to start taking a med to counter that. I continue to take the BP med even after switching to Xywav, because it's a beta blocker and helps to counter heart rhythm problems caused by daytime stimulants. The only difference I've noticed with Xywav is its god awful taste. I hate it! Xyrem was very salty, but I if mixed with tomato juice it actually tasted good. (The Xyrem pharmacists will tell you it "must" be mixed with water, but my sleep doc says they're full of it and to just ignore them. The original instructions in the clinical trial had said it could be mixed with juice.) I was also in the clinical trial for Wakix, and assumed I was in the control group getting a placebo, because I couldn't tell that it was doing anything at all. I got a year's supply free for it too, but when the year was up I didn't even bother trying to secure funding for a future supply, I just quit taking it, and didn't notice any difference at all. I apologize for this lengthy comment, but my Focalin is working really well today, LOL, and I type 115 wpm.

August 14, 2022
A MyNarcolepsyTeam Member

I Also tried the Wakix not on a clinical trial and it did nothing for me. It was like I was not taking medication at all.

April 5, 2023
A MyNarcolepsyTeam Member

I'm finally back on Xyrem, but haven't tried Xywave. This and the new stimulant Sunosi are the only meds I've tried that help me sleep better (Xyrem) and ensure I can stay awake during the day (Sunosi) as long as I take both. They are both very expensive, but if you have a sleep study done and have commercial (group) insurance you can usually get them with a prior auth at a reasonable copay. Check with your doctor if your insurance says they cover with a prior auth. Without these my live is miserable.

November 30, 2021
A MyNarcolepsyTeam Member

It's not really in a bad change. I have tried new foods and even found some I like. I hope your feeling better with the xwave.

November 27, 2021

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