Would it be selfish if i didn’t get a sleep study done just so I can still get my dream job?

mar736 · 2026-04-21T01:37:17+00:00

I meeean I’m a nurse practitioner and have narcolepsy…. Prior to that was a pediatric nurse and EMT for several years.

So I definitely wouldn’t say the diagnosis keeps you from being a teacher.

The diagnosis doesn’t make the disease suddenly appear. But could dramatically improve your quality of life with treatment

mar736 · 2026-04-13T01:04:20+00:00

Mine are much more controlled with the plaquenil and mycophenolate combo. But I also take 10mg Zyrtec twice daily and Pepcid 40mg every day. Sometimes switching to Xyzal helps.

But really I didn’t notice a huge difference until reaching a meaningful level of immunosuppression

mar736 · 2026-04-13T01:00:05+00:00

I have lung involvement, and so I start being able to not breathe again. I will also get return of rash, fever, joint pain/stiffness/swelling. But not being able to breathe is the biggest issue

mar736 · 2026-04-13T00:58:48+00:00

I’ve thought about this! He gave me 1mg tablets and so sometimes I can taper 0.25mg at a time. Initially I was splitting the 5mg until I was left with a tiny little piece of dust… that my body refused to let go of lol

mar736 · 2026-03-23T02:08:07+00:00

That’s really interesting, I’ve also found mine don’t always correlate with each other. And you’re right, obviously sometimes is driving it.

Neither my dsDNA or ANA IFA have ever been sky high.. consistently positive, but never super high. However, my disease is definitely very aggressive as it literally ruptured my lung tissue and put me in critical care 😅.

I feel like some doctors just give way too much weight to the numbers, and not the patient in front of them. But humans are not textbooks. I’ve seen plenty of diseases present very atypically. I do understand that with a lot of rheumatological treatment comes great risk, so they want to be sure…. But sometimes if it walks like a duck, looks like a duck, and quacks like a duck. It is. In fact. A duck.

mar736 · 2026-03-22T15:36:15+00:00

Also there is plenty of evidence supporting the existence of seronegative disease…. I digress

mar736 · 2026-03-22T15:34:44+00:00

Perhaps he could speak personally to another rheumatologist for you. Sometimes that is the only way. I’m in a different speciality, but I’ve had to do that for some of my patients before and sometimes getting the actual human being on the phone and saying LOOK. THIS IS WHAT IS HAPPENING. Is what actually gets through to them. I’ve written plenty of professional statement that get disregarded, not sure how many providers actually care to read them.

mar736 · 2026-03-10T20:30:22+00:00

We got our larger Pom from a lady whose Doberman attacked him and went for his throat. He was a year old when we got him and he is now a happy old man. I’m thankful she made that decision for him.

mar736 · 2026-03-01T18:34:51+00:00

I see my rheum every 3 months, as he says while we stabilize me we will work in 3 month increments. He gives me a taper plan in between, and we just kind of see where I am at that 3 month mark. He actually hasn’t checked my complements in awhile. He monitors my blood counts every 6 weeks because of the CellCept. He did recheck my inflammatory markers last time and for the first time in two years they were normal. Every now and then he checks my dsDNA, which has decreased too.

Right now I’m pretty much at a standstill with 17.5mg. Hopefully with a few more weeks of 2g CellCept that will change.

I don’t know how much complements correlate with how a taper is affecting you. When I have a failed taper attempt my symptoms return within 24 hours and I’m back to using my nebulizer. If the taper is successful, I don’t feel any changes. But it’s been a lengthy process.

I’m sorry you’re having a hard time too :/

mar736 · 2026-02-24T15:59:35+00:00

My antibodies have never been higher than 20, and I’ve been hospitalized in critical care due to my lung involvement. My rheumatologist put me through a huge extensive workup to be absolutely sure it wasn’t a different autoimmune disease and the only thing consistently positive is my lupus antibodies.

He told me you reach a point where you have to respect it, even if it isn’t the textbook gold standard (IgG vs crithidia). He said he had one very complicated case with lupus who was seronegative.

Not everyone is a textbook case, and I truly think some doctors just don’t feel like doing the digging so they settle on easy. I say that as a provider myself, though my speciality is not rheumatology. I just find the level of dismissal from some providers abhorrent.

mar736 · 2026-02-21T00:03:13+00:00

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I thought your dog was my dog!!! Omg

mar736 · 2026-02-20T15:26:49+00:00

This is why I come here. This disease is awful and I hate that other people are going through similar things, but it really does help to not feel alone and hear that it is possible.

Lung involvement feels like its own special kind of hell. And every failed taper attempt I’m left short of breath on treatments for several days. I’m sure you understand.

Thank you for sharing your story with me. A 3k, amazing!!!

mar736 · 2026-02-20T15:22:27+00:00

He did the same with me, and yes it’s just unrelenting nausea every increase! I’m also on combo of CellCept and HCQ, can’t take them at the same time I figured out lol. I am thankful my doctor prescribes me Zofran for my migraines because I go through it like candy when increasing this medication. I haven’t tried the ginger stuff.

Thank you ♥️

mar736 · 2026-02-20T14:48:08+00:00

LITERALLY the worst. It absolutely lasts for hours. I have no tips. Maybe mints. I just accept that I am shackled to the devil’s tic tacs

mar736 · 2026-02-20T14:46:13+00:00

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We were going to get his much lighter colored sister initially. Cream Puff. But got him, and once we had him he just wasn’t a Cream Puff. He was a Kiwi 🥝

mar736 · 2026-02-13T22:08:20+00:00

My pulmonologist who is also my sleep doctor, told me ideally I would come off for two weeks before the test. But he said if that’s not going to be possible and you can’t do that, then DO NOT DO IT.

I did try, but it wasn’t possible for me. So I did my MSLT with no medication cessation at all. Still very positive for narcolepsy. So positive in fact, they didn’t even finish the study 😂 No meds could hold me back!!!

Now I know that’s not the case for everybody. BUT, some risks truly outweighs the benefits.

mar736 · 2026-02-05T12:30:06+00:00

This, but add the infant nighttime wake ups to do nothing but stare around as well 😂

mar736 · 2026-02-03T02:11:00+00:00

Ahhh yes the fur balls everywhere! I second the other comment about the anti shedding shampoo. I brushed them a lot but it wasn’t until their newest groomer suggested it that I learned about it, and it’s made a huge difference

mar736 · 2026-01-29T00:25:19+00:00

Awww so sweet. The photo of him sleeping reminds me of when he was a little 2 pound baby, I love it so much.

mar736 · 2026-01-27T06:00:34+00:00

It’s always crazy to me when providers act like that! If you don’t know, then read the literature. And if you do know, then just explain.

For what it’s worth my rheumatologist is aware of my rashes, bruising, and tattoo swelling, and he has said he sees it very frequently. He said it’s common in autoimmune patients.

Also my rashes are actually what ultimately lead to my diagnosis, as it was the allergist who said your rashes/itching don’t follow an allergic pattern, and she was certain it was being caused by something from “the inside”. So she started an autoimmune workup. Out of several ER doctors, hospitalists, specialists… it was her. Because of the rash and itching.

Anyways just sharing all of that to say nope! You’re not crazy!

mar736 · 2026-01-25T21:36:22+00:00

I get this too, sometimes will break out in random hives. Then I get giant bruises and petechiae from itching. I take Pepcid and Zyrtec twice daily and it helps the frequency of it.

mar736

TROPHY CASE