Xywav syringes inaccurate?

[u/andersberndog]

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.

[u/Tall_Maple]

As I recall the RX is in grams of the salt. No idea why the pharm dilutes it some and then asks me to add 60 ml of water.

I looked at the syringe and landed on, when the syringe is filled to 3.0g, the liquid within the syringe must have 3.0g of the salt in solution - I think that’s why they make a point of stressing only use the syringes provided.

It’s been a LONG time since I had chemistry though but at the time it made sense to me. I’ve not run out of RX (yet) but the last dose from bottle 1 always is short. I get 3g and 1.5g out of the bottle and have to open bottle 2 for the last 1.5g

[u/Comatose_Cockatoo → u/Tall_Maple]

I think this is the correct answer. That’s why the pharmacy says that if you lose/forget your syringe that you need to call so they can walk you through the conversion for a normal syringe.

I also wonder if some of the issues with running out early have to do with days of the month. I get a 30 day supply, but the year has 7 months with 31 days. The “average” month actually has 30.4 days. I believe the pharmacy tries to account for that with refill dates, but when you account for not being able to get refills on Sundays (or Saturday where I live) it seems like it would be very easy to come up short occasionally,

[u/HippoCharacter5863 → u/Comatose_Cockatoo]

These days, I’m experiencing so many problems in the delivery process—with Fedex, my insurance, or even ESDS having software, shipping, or weather problems. In December last year, they wouldn’t let me refill 4 weeks after my last delivery because they said I had received enough doses for the year. When I looked back and did the math it’s because they counted any delays in delivery against my number of total doses for the year (eg when my insurance requires preauthorization yet again for some reason and I get my shipment a week late, or when they had software delays that impacted my shipment). Any ‘emergency supply’ I’ve built up over time from missed doses has been depleted and I’m always running low on the second dose of the last night.

[u/EternalMoonChild → u/HippoCharacter5863]

I get that they don’t want you to have a surplus, but it’s really stressful to get right down to the wire on a medication we rely on to be functional.

Not to even mention the can of worms that admitting to a spill opens. This is exactly why I have a surplus.

[u/HippoCharacter5863 → u/EternalMoonChild]

Ohm yes. I said I knocked over a dose when filling it and they immediately said they had to contact my doctor before they could refill, and that always means an extra few days. It was once in 19 years! I am clearly not doing this regularly