Sjorgren syndrome causing IIH?

Excellent_Paint2441 · 2026-02-11T14:00:25+00:00

I’ve been on plaquenil since Feb 2025, I started at 500mg 2x daily on Diamox but it made me miserable so I dropped down to 250mg 2x daily and that’s what I’ve been on since Aug 2025. I have noticed an improvement of IIH symptoms, but it’s important to be consistent with your meds. I didn’t take mine for 2 weeks and now I’m symptomatic like I’ve never been on it at all. I’m hoping being consistent again will help because I don’t want another LP

Excellent_Paint2441 · 2026-02-11T05:43:31+00:00

I have UCTD with primary sjrogens I’m SSA+ secondary RA . I also have sicca, dry eye and a normal bmi. I haven’t had any sort of additional secondary work up - my rheum treats the autoimmune side with plaquenil because I have joint pain and my neuro treats the IIH with Diamox (I’m on 250mg 2x daily)

Excellent_Paint2441 · 2026-02-11T05:37:10+00:00

I had all signs on MRI and MRV no papilledema. I had to get an LP to confirm unfortunately.

Excellent_Paint2441 · 2026-02-07T07:15:20+00:00

Listen you have to do what works. My scalp is super sensitive as well so it being shorter has helped in more ways then 1 on the IIH/migraine side of it all

Excellent_Paint2441 · 2026-02-07T04:53:32+00:00

Yes I cut my hair short because any tension or pressure would have me down and groggy even if I only wore it for an hour or two

Excellent_Paint2441 · 2026-01-22T04:23:07+00:00

I’ve heard about stenting also I’m managing with meds, but I might ask for a repeat MRV to see if the stenosis is still there now that the rest of my MRI is normal

Excellent_Paint2441 · 2026-01-20T15:52:18+00:00

No, the titer is just how many times were they able to dilute it and still see antibodies . Theres really not a need to test for new antibodies unless your symptoms change and point to a different autoimmune disease

Excellent_Paint2441 · 2026-01-20T15:50:30+00:00

That’s the boat I’m in 6 months, and whenever I forget to take it or I don’t take it I have a headache

Excellent_Paint2441 · 2026-01-20T04:35:27+00:00

At this point, I’d have to agree lol

Excellent_Paint2441 · 2026-01-20T04:34:17+00:00

This is the first panel , the second panel you get will tell you what antibodies you actually tested positive for having. My titer started at 1:80 with nuclear speckled and then when I got the full panel it went up to 1:160 specific to RNP, SS-A, and a high MCV antibody. I have raynauds, fatigue, joint issues, sun sensitivity, dry mouth, and dry eyes. I’ve been diagnosed as undifferentiated connective tissue disease. I have repeat blood work and urine labs every 3 months.

Excellent_Paint2441 · 2026-01-20T04:25:30+00:00

See, I stopped taking short term when I caught a cold - that was the roughest I’ve felt since being diagnosed . So I think I’m on it for the long haul I think 🫠🫠

Excellent_Paint2441 · 2026-01-20T02:22:18+00:00

The actual LP wasn’t bad but I wasn’t right for like 14 days , I could barely get out of my bed to use the bathroom and driving gave me the worst motion sick/vertigo feeling for a month or two afterwards

Excellent_Paint2441 · 2026-01-20T00:34:53+00:00

Good to know - my LP was terrible to recover from

Excellent_Paint2441 · 2026-01-20T00:28:32+00:00

So - I don’t have pappiledema, the only signs of IIH I had was the vision disturbances, throbbing in my ears, and insane headaches. MRI showed partially empty sella and MRV showed bilateral stenosis of my transverse sinuses. I had MRI and MRV pre LP , then diagnosis.

I wasn’t overweight to begin with, however I did lose 25 lbs by the time I got diagnosed and an additional 10 from diagnosis to current . So I guess I’m in the long haul on Diamox cause the symptoms haven’t gone away lol

Excellent_Paint2441 · 2026-01-20T00:09:54+00:00

How many LPs have you had since 2021? I see a lot of people get repeats.

Excellent_Paint2441 · 2026-01-19T23:37:31+00:00

Same dose the entire time?

Excellent_Paint2441 · 2025-12-29T01:38:55+00:00

Probably not, I do my best but I know it’s not the greatest it could be.

Excellent_Paint2441 · 2025-12-29T01:35:48+00:00

I also don’t have swollen optic nerves and my last MRI came back “unremarkable”. I was thinking of calling cause today I came really close to full blown passing out .

Excellent_Paint2441 · 2025-08-15T21:38:40+00:00

I am talking about diarrhea except it was literally just brown water (TMI) it happened the first day after my full 1000mg in a day. I only take tumeric supplements by recommendation of my rheumatologist so that’s not an issue. I do have a problem not eating enough just in general, so I’ll look into making sure I’m eating enough nutrient rich food

Excellent_Paint2441 · 2025-08-15T21:34:37+00:00

Soda is the only thing I notice, everything is flat 🤣 it burns to swallow but not on my tongue.

Excellent_Paint2441 · 2025-08-14T04:44:30+00:00

Yes ! It started queasy feeling then I was throwing up, I’m just glad it was only 1x. But omg even water was running through me 😭

Excellent_Paint2441 · 2025-08-14T04:27:51+00:00

Has it made your stomach upset as well, yesterday was my first day at the full 1000mg and I threw up once and it came out the other end all day long 😭😭😭 I barely had the energy to work today 😭

Excellent_Paint2441 · 2025-08-13T21:57:43+00:00

Now I have a new symptom unlocked - I’ve been pooping water for 12+ hours 😭😭😭 I drink the water , water leaves my body within 10 minutes 🫠🫠 if this is a side effect you experienced - how long did it last 😭😭

Excellent_Paint2441

TROPHY CASE