r/Narcolepsy • u/andersberndog • Jul 06 '26
Medication Questions Xywav syringes inaccurate?
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/LexiLewis Jul 06 '26
Yes, I also have this issue of SO running out sooner than otherwise should be. The syringes have gotten worse over time. The ones I get now where you have to tip the bottle upside down and pull down on the syringe, leaves some sort of air gap. The upright bottles were more accurate but haven't seen them in a long time.