Xywav..I Have Taken Xyrem For Years W/no Problem, I'm 71. Any Benefit To Switching To This New Rx? | MyNarcolepsyTeam

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Xywav..I Have Taken Xyrem For Years W/no Problem, I'm 71. Any Benefit To Switching To This New Rx?
A MyNarcolepsyTeam Member asked a question 💭
posted November 20, 2020
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A MyNarcolepsyTeam Member

I take both Xywav & modafinil & Ritalin. With the Xywav I hope to wean the other two but I still get sleepy in the afternoon. Not on full dose of Xywav yet. Sleeping in the afternoon is not an option for me so I rely on Diet Coke then to get me through.

posted February 15, 2021
A MyNarcolepsyTeam Member

I'm 68 and I took Xyrem from when it was approved in July 2002 until Xywav became available in July 2020. The high sodium in Xyrem raised my BP, so I had to start taking a beta blocker to counter that. I also noticed that the saltiness of Xyrem made food taste bland causing me to want to add more salt to things. So I was looking forward to the switch to Xywav. And I can't tell any difference, except the taste. I can't stand it, it tastes awful. And I think that is probably done on purpose, to help prevent abuse of it. But at our age, all that Xyrem sodium can't be good for us, so I think switching is beneficial.

posted August 14, 2022
A MyNarcolepsyTeam Member

PS - I have taken Ritalin and Venlafaxine for years. Ready for a change!

posted February 6, 2023
A MyNarcolepsyTeam Member

MichaelJY, I am glad to hear you find Xywav as effective as Xyrem. I start Xywav soon, hopefully. Must first give a spinal tap sample. A lab will test the sample to see if my orexin levels are low enough to demonstrate that I have type 2 narcolepsy.

posted February 6, 2023
A MyNarcolepsyTeam Member

Would you recommend Xywave over Modifanil or do you know anything about Modifanil. That is what I take . 400 mg per day
I am still finding myself napping a lot and missing out on the day. Thanks

posted February 13, 2021

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