Should I increase my Xywav dose, or keep it the same for now?

Medication Question

I apologize in advance, because this is probably going to be pretty long.

I started Xywav in March, and I found my therapeutic dose in May. My titration progress was as follows (all are 2x nightly): 2.25g, 3.0g, 3.75g, 3.5g, 3.25g. The dose that I had the most success with was 3.25g twice nightly. My prescription while I was titrating down from 3.75 stayed at 3.75 for an extra month because I had started moving down very close to my refill date, so not only did I not know which dose to request as a replacement yet, they wouldn’t have been able to get the request processed fast enough. During that month, I found 3.25 as my best dose and told my doctor to put in a new prescription for it. He said he would, but when he eventually submitted a new prescription, it was still for 3.75g. I’ve been trying to get it fixed for a few weeks, and he isn’t being super responsive to the pharmacy.

However, on top of that, I’m now conflicted about whether I might I need to go back up to 3.5g. Lately, I’ve been noticing that I’m having more trouble getting up in the morning than I did when I first started this dose, and I’ve been needing to take naps on the weekends. I also was getting about 4 hours of sleep per dose before, and now it’s down to 3-3.5 hours. I know that isn’t a huge change, but it makes me worry that the reason I’m feeling more tired is that the dose is losing effectiveness. The trouble is, I can’t really figure out if that’s what’s happening, and the stress about my doctor is just making me more confused about what to do.

The way I see it, there are two possibilities. First, it could be that my body has gotten used to this dose and it won’t be as effective going forward, so I need to increase. In that case, the outcome could either be that my body just takes a couple of months to show how a dose will actually feel in the long run, and 3.5 will actually be better for me than 3.25 if I give it more time, or it could be that I’ll just keep increasing and never be able to find a dose that I won’t acclimate to. Secondly, it could also just be that this IS my therapeutic dose, and the new tiredness that I’m experiencing is the novelty wearing off. In that case, going up to 3.5 would only serve to make my side effects come back/get worse, and I would end up needing t o go back down anyway.

I’m really on the fence about sticking with this dose for longer versus increasing. Having to fight to get this prescription changed is making me very hesitant to mess with it prematurely, but having a higher dose than I need is much easier than having a lower one than I need. If I changed the request to 3.5 now, I would have the added bonus of being able to drop back to 3.25 whenever I need to without worrying about needing the prescription changed immediately. If I continue to push for 3.25g, and end up needing 3.5, I won’t have that buffer. I would need another new prescription to increase, and if this kind of delay happens again, that means I would be stuck at 3.25 until it got dealt with. But at the same time, jumping up to 3.5g without being sure whether I need it makes me worry that I might end up in a situation I’ve read about where people keep needing to increase until they can’t anymore, and the meds eventually just lose effectiveness altogether. XyWav is the only thing that’s worked for my symptoms so far, and I don’t want to do anything to jeopardize that. I don’t know if it’s true, but it feels intuitive to me that sticking with the same dose longer would reduce the risk for that happening. I’ve been turning this over in my head for days, and I’m leaning towards just leaving my dose at 3.25g for now, but I can’t tell if I’m just massively overthinking it and I think I need some outside perspective.

TL;DR: My doctor has been difficult to deal lately with regards to prescription changes. I don’t know whether it’s worth trying to increase my dosage. I can’t tell whether my current dosage has become less effective, or I’m just used to it. Is it possible for a therapeutic dose to feel less effective purely because of mental reasons rather than actually losing physical effectiveness? If so, how does someone tell the difference between mentally getting used to it, versus the meds actually losing effectiveness? If there’s a possibility of becoming too acclimated too quickly and rendering the meds ineffective permanently, does delaying an increase in dosage actually help mitigate that? Or, alternately, am I just overthinking it like crazy?

Posted Jul 13, 2026, 4:24 PM UTC

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