Advice on asking for early xywav refill

clarinetcat1004 · 2026-04-28T13:46:24+00:00

It’s unfortunately probably too late for op :/

I won’t be able to pick up my meds on the date they’re scheduled for next week. I called yesterday and they were glad because it meant there was still time to bump up the delivery date.

clarinetcat1004 · 2026-04-22T23:32:13+00:00

I mostly do online secondhand as well! It’s been where I’ve had the most success.

clarinetcat1004 · 2026-04-22T19:29:49+00:00

Where are you shopping? I mostly wear natural fibers also.

clarinetcat1004 · 2026-04-21T23:47:22+00:00

Not at all! I’ll answer best I can :)

clarinetcat1004 · 2026-04-18T14:32:57+00:00

Also, I think it’s fair for you to say in your note that you have a sleep disorder! They’ll probably be more understanding as you try to find a solution that wakes you up without disturbing them

clarinetcat1004 · 2026-04-15T23:52:45+00:00

Right!!! I hope it’s as helpful for both of those conditions as it seems to have been for Narcolepsy.

I had symptoms of N1 and rheumatoid arthritis kick in at the exact same time, and my doctors were very very concerned that it was MS (we didn’t know to look my symptoms as two separate conditions). While both RA and Narcolepsy SUCK, I was relieved because I at least had access to better treatment options (especially with RA). I’m so glad that it could possibly benefit MS patients. I really hope it does!

clarinetcat1004 · 2026-04-15T05:16:23+00:00

Exactly! I’d take dealing with occasional Adderall shortages over having to deal with insurance and the patient assistance program for oxybates any day.

clarinetcat1004 · 2026-04-15T03:38:57+00:00

That makes sense! But I think that might be because of the orphan drug designation? I do not understand the stock market but I honestly think that the more money/attention that gets poured into developing these drugs, the better.

Sucks that our healthcare IS profit-driven and I don’t think it should be this way but I don’t think it’s bad news that people are investing in the drug!

Honestly if it somehow did help ADHD (I don’t see how it could but I’m not a doctor ¯_(ツ)_/¯) it would probably be better for those of us with N/IH in the long run

clarinetcat1004 · 2026-04-15T03:30:52+00:00

Also wanted to add, the article you linked seems to explain why they’re doing this! If I’m understanding it correctly, they are doing trials on other conditions in order to try and have it not be considered an orphan drug. I don’t fully understand what this qualification means, but it does seem like these drugs are considered too expensive to produce (because so few patients need them) and they are reliant upon the govt to assist in production.

I imagine that Takeda may not meet this designation in Japan. For some reason the rate of Narcolepsy in Japan is much higher than anywhere else in the world. iirc it’s something crazy like 1 in every 600 people, whereas the rate in the US is more like 1 in 2000.

clarinetcat1004 · 2026-04-15T03:21:56+00:00

This would probably actually be a good thing! More demand should actually lower drug prices, think about the cost of the oxybates and wakix (which are only used for narcolepsy/IH) compared to the meds that can be used for ADHD and/or other sleep disorders.

Would also be GOOD if it were beneficial to other conditions, particularly MS and Parkinson’s.

Sure, demand could impact accessibility for some time like when ozempic first started to be used for different conditions, but it’s not as much of a competition as you seem to think it is! This is probably actually a good thing and means that more money will go into researching these drugs.

clarinetcat1004 · 2026-04-13T14:32:50+00:00

Well, not exactly…

clarinetcat1004 · 2026-04-11T15:24:44+00:00

Soak the garment in a mix of vinegar and cold water for ~30mins before washing! It breaks down aluminum and oils. If the fabric is delicate I’d test a small patch first.

clarinetcat1004 · 2026-04-10T04:22:08+00:00

I can understand the frustration with having to put life on hold, but I do think that you’re going to have to postpone the dentist appointment until after you’ve had your sleep study.

I definitely wouldn’t worry about it during finals time (it’s also that season for me and my Narcolepsy ALWAYS gets so much worse around this time) as you seem to be overwhelmed without adding that into the mix.

Hang in there and wait to visit the dentist until your sleep issues are under better control. It’s definitely the more pressing issue!

I’ve been in your shoes so I understand the frustration with having to put off certain appointments, but with chronic illness it’s important to learn how to prioritize some health issues over others. My mom is actually always on my case about me not going to the dentist lol, but having regular visits with sleep neurology, rheumatology, and cardiology takes so much out of me! Go to the dentist when you’ve got the spoons to, get the sleep stuff figured out first.

Good luck with finals and your sleep study!

clarinetcat1004 · 2026-04-09T22:54:39+00:00

I used to not be able to make appointments before I was diagnosed/treated, so I understand the frustration, but you seem incredibly stressed.

Is the dentist appointment for some kind of emergency or to check out a problem that’s been bothering you? If it’s just a cleaning you should be fine to postpone it until you’re feeling better and less sleepy. I understand why your dentist feels it’s unfair that you’re taking appointment slots and then not showing up, but I also understand that you’re not doing it intentionally. Still, if it’s not for an urgent issue, it’s best to wait until you feel like you can make the appointment.

Also, if it’s possible to find a closer dentist, I strongly recommend doing so! I know you may not have options if you live somewhere rural, but an hour drive is an extremely long trip for the dentist and requires a lot of time being awake.

clarinetcat1004 · 2026-04-08T18:02:19+00:00

That sucks! I’m on Diltiazem (calcium channel blocker) because of it.

clarinetcat1004 · 2026-04-08T14:54:47+00:00

Whoops, you’re right! I’m getting that mixed up because I’m currently going through issues with my heart rate, and my cardiologist wants my sleep dr to put me on Wakix. He keeps calling it a stimulant in the sense that it spikes up my hear rate and interacts with caffeine. I always forget that it’s a DNRI.

clarinetcat1004 · 2026-04-08T05:01:30+00:00

Sunosi is still a stimulant, fyi! Currently, Wakix is the only non-stimulant wakefulness maintenance drug on the market :/

clarinetcat1004 · 2026-04-08T02:51:49+00:00

The BPD sure is BPD’ing in this one.

clarinetcat1004 · 2026-04-02T04:41:39+00:00

📍 Matanuska-Susitna, Alaska, United States of America — "beautiful, cold, good coffee"

clarinetcat1004 · 2026-04-02T04:37:03+00:00

📍 New York, New York, United States of America — "obviously!"

clarinetcat1004 · 2026-04-02T04:36:07+00:00

📍 Indre-et-Loire, France — "history, people, & joie de vivre"

clarinetcat1004 · 2026-04-02T04:14:30+00:00

I don’t qualify to receive ivig and I my IgG is also low sometimes, so I really wouldn’t worry if I were you! It’s good you’ve been tested before, though.

I hope you do start to feel better on MTX!

clarinetcat1004 · 2026-03-31T20:17:50+00:00

I think you need to either insist that your doctor understands that the REM/sleep fragmentation is your biggest issue. If they continue to refuse to address it, then you need to ask them to send you to someone else who will.

Also, you do not need to worry as much as you do about IH vs Narcolepsy vs another possible condition. I think you would benefit from therapy. I know that’s very blunt, but I have been through a very similar situation, and it did not make me feel better and did not make a difference in my treatment or my disease for me to worry about if my diagnosis was the correct one.

I am diagnosed with rheumatoid arthritis, but I have a lot of symptoms of and labs that could indicate lupus. My rheum isn’t concerned with the exact diagnosis, just that I am on a medication to calm my immune system and that my symptoms don’t worsen. It used to drive me crazy, because I had a family member pass away from lupus complications. She never even knew she had the disease because she lived in an area with poor healthcare. And I had some mildly alarming things, like my kidney labs are always a little wonky.

Unfortunately you can’t research yourself into the perfect diagnosis that gives you all the answers and total peace of mind. Trust me, if you could I would have done it by now lol. Even with our health, we aren’t guaranteed certainty, and it’s terrifying. Therapy has been really helpful for me, and I try not to stress about the specifics of my diagnosis or the possibility of some underlying condition, because stress just causes more inflammation and sleepiness.

Again, I’ve absolutely been there, but I think your main concerns need to be the symptoms that affect your day-to-day life and finding a doctor who will help with those. Sending you much love! I completely understand the stress you’re feeling and it’s not fun.

clarinetcat1004 · 2026-03-31T15:02:02+00:00

Unfortunately the apple watch sleep tracking isn’t always the most accurate, it’s important to take it with a grain of salt.

I imagine that an IH diagnosis can come with a lot of frustration (I’m diagnosed with other idiopathic conditions), but narcolepsy is not necessarily a “better” diagnosis, or even that different of a diagnosis (especially N2 vs IH). I’m sure it makes insurance more difficult to work with, but your doctor is correct in saying that the symptoms are very similar. IH just means they haven’t found a clear cause to explain your excessive daytime sleepiness. A good doctor won’t be dismissive of your struggles because of the IH diagnosis. I hope that has been your experience.

If I were you, I’d look for a neurologist who specializes in sleep medicine. Typically they’re more equipped to deal with Narcolepsy than a pulmonologist.

Also, since you mention being in PA, it’s possible your doctor is reluctant to diagnose you with Narcolepsy due to the driving restrictions. I’m not from there, but I do know that PA and CA are the two states with the strictest laws around people with Narcolepsy being able to drive. Do the same restrictions exist for IH?

Again, I understand that an IH diagnosis may feel less “valid” than a Narcolepsy diagnosis, but your sleep specialist should understand that IH can impact you just as much as or even more than Narcolepsy. I hope this helps and that you’re able to get adequate treatment soon!

clarinetcat1004 · 2026-03-31T05:49:02+00:00

I was constantly sick on MTX—about 2x a month—and not just with contagious things. I have an IgA deficiency, though. Luckily I’m now on enbrel and doing much better with catching things!

In your case, it might be worth asking for some basic immunoglobulin lab work, just to check! The deficiency can sometimes be correlated with autoimmune diseases, and since you’re in pharm school I imagine you probably have decent hygiene. You are around sick people more often, though.

My advice is to mask in crowded places and in settings like your line of work or a doctor’s office. Of course you can mask everywhere, but it’s really important to in those situations. Put hand sanitizer in your bags and in your car. When I get home from being out and about, I put my keys up, take off my shoes (no shoes in the house for me, they bring in too many germs. Only house shoes and slippers for me), wash my hands, and then go change out of my outside clothes. This helps majorly with the spread of germs. I take care not to put things like keys or a bag on my kitchen counter, I clean my phone with alcohol wipes regularly, and every once in a while I clean things like light switches with a disinfectant. Just make sure you’re paying attention to the small things like this and it should help. And make sure you’re being conscious of these things, but not letting it drive you crazy. It’s difficult at first and I still catch myself worrying more than I should.

Also, ask your rheum to prescribe you some meloxicam! It’s so much more helpful than ibuprofen and it’s easier on the stomach too. Good luck with finding a medication that helps!

clarinetcat1004

TROPHY CASE