▲ 4 r/lupussupport+1 crossposts

Methotrexate Pills First Round

TLDR; any tips for getting through the worst side effects? Was the first time you took it the worst side effects for you or later?

Hey all, newly diagnosed, but not very new to the symptoms.

I just took my first dose of methotrexate Saturday night, coming up on 48 hours ago. The first 12 or so hours were mostly weird brain fog and thinking this was way easier than anticipated. Then it hit me like a mack truck.

I had a migraine headache in my top 3 worst of my life. If the worst part of it had lasted any longer, I was seriously considering a trip to the hospital just to rule out any brain issues. After that, it's been increased body aches, rashes and fatigue. The brain fog is still pretty heavy, but I think I'm doing alright navigating that for the most part, at least.

Any tips, tricks? Suggestions? What was everyone's timeline like? Did it get better or worse for you? Do I really need to wait 6 weeks to find out if it'll help me?

Thanks so much in advance, this is pretty intimidating

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u/H3k8t3 — 10 days ago

Newly Diagnosed (Spouse POV)

Hey all.

We just got back from picking up the MRI report that clearly says my husband has a Rathke's Cleft Cyst 0.5 x 0.6 x 0.5 with intrinsic T1 hyperintensity and T2 mild hyperintensity. No suprasellar or cavernous sinus involvement.

I have some medical background, but to say I'm out of my depth here is such an understatement.

With a few minutes of reading and research, I'm pretty sure his symptoms go back at least a decade.

Can anyone give me a rough idea of what we're looking at as far as their experience with size, surgery, meds, etc? I know medicine is always a "Your Mileage May Vary" situation, I'm just really in need of info and/or experiences anyone would like to share.

Thanks so much, I'm sure y'all will be sick of me posting here before too long, but I'll do my best to keep my emotions elsewhere.

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u/H3k8t3 — 1 month ago

Flare triggers?

I'm not sure I'm in a true flare, but I have so many autoimmune and chronic illness things going on, it kinda feels impossible to tell unless it's multiple.

I'm just trying to figure out why I'm suddenly having more dislocations/subluxactions than usual. The last two days in a row, the right side of my jaw has suddenly subluxed really badly, with no obvious cause. I wasn't even eating. I had my nighttime mouth guard in both times(but it's very thin). My ribs, knees and elbows aren't behaving, either, lately.

Anyone have any common triggers or similar flare-but-not experiences? I'm open to advice, whatever you got to share, really.

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u/H3k8t3 — 2 months ago
▲ 4 r/Celiac

US veterans- gluten free meds through the VA?

I apologize for this being so ridiculously niche. I know I'll get more responses in a veteran only sub, but I don't want to have to defend my medical condition to a bunch of uninformed dude bros if I don't have to.

I've been feeling awful for ages now, legitimately was pursuing testing for other autoimmune conditions it's been so bad. Finally narrowed it down some, and I think I've been getting glutened by the dicyclomine I take daily for, ironically, the spasms in my GI tract caused by gluten and IBS.

I have no idea how to navigate this, or if there's even a way to ensure the meds I get from the VA are truly GF. It seems certain manufacturers use gluten as a filler, while others don't, if I'm understanding correctly.

If anyone has any experience or advice, I appreciate it. I definitely intend to go in person (when I feel slightly less like I'm dying) to talk to them about it, it just seems useless at the moment.

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u/H3k8t3 — 2 months ago

Dexamethasone test ?

I took the dex pill last night, had my blood drawn at 8 a.m.

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Today is the most functional and energetic I've been in maybe years at this point, to the extent it has me a little freaked out.

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I'm sure I'm too old for an Addison's diagnosis (40), but am I wildly off base for thinking this probably means something related is going on?

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I'm desperately trying to understand all of this, and really wanting to believe this means there's hope. The brain fog, low energy, etc have been so awful for so long now.

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Any feedback is very appreciated

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u/H3k8t3 — 4 months ago

Enabler Parent Reconnection?

This may ultimately be fruitless, but I just got a very strong need to reconnect with Enabler Father and reached out. Truthfully, I'm not even sure he's alive or if I would even have heard about it if he wasn't, which is surreal.

Nmother has passed on, so there's no concern about her, thankfully.

Does anyone have any experience or thoughts on this? I think I'm mostly grieving the family i wish I'd had (which i know a lot of us go through) and just looking for support. I'm sure I'm over tired, which helps exactly nothing, of course.

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u/H3k8t3 — 5 months ago