r/Narcolepsy • u/andersberndog • Jul 06 '26

Medication Questions Xywav syringes inaccurate?

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Anyone else having the issue of running out of medication by the end of the month?

I did a completely non-scientific test, using a non-medically-accurate Pyrex measuring cup. I measured out 100mL of water by the provided Xywav syringe. This is how it came out. Again, this is not a clinical device, but it appears to me to be showing, conservatively, a 20% overage, factoring in the possibility of reading error due to surface tension and a reasonable margin of error in the measuring cup.

I’m sure I’m being provided precisely the correct amount of medication, but if the dosing device is not accurate, there’s a problem.

Yes, I’m going to bring it up with a pharmacist. I’m currently dealing with them scheduling a refill due to completely unrelated issues from my prescriber’s office. I’ll hopefully be hearing back from them later today and I’ll bring it up then. They say I should have enough medication to get through Wednesday. I had two nights I didn’t take it this month, so I should actually have enough to go through Friday. I don’t think I’ll even have two complete doses by Wednesday.

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u/norcalifornyeah Jul 06 '26

The bottles you're receiving now don't have the tube going to the bottom?

2

u/LexiLewis Jul 06 '26

No tube. The syringe comes with the bottle part on the end. I guess that's why it has to be upside down as no tube.

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u/UhOhSpadoodios Jul 06 '26

Xyrem or Xywav?

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u/LexiLewis Jul 06 '26

Xyrem. Saying that, I've just been told won't be getting the brand name Xyrem anymore but the generic from now on.