u/AttachedAndUnhinged — reddlx

Breakthrough GERD Symptoms?!

Hi friends. Diagnosed with CREST. For the past 3 days I’ve had absolutely insane heartburn. It was to the point this morning that I could barely breathe and, worrying it had something to do with my heart, I went to the ER. Apparently it’s breakthrough GERD symptoms. I’m on 80mg of pantoprazole daily (40mg twice a day) and since I’ve been on this dose (over a year) I haven’t had any episodes like this. Does this mean my poor esophagus is getting more damaged? I already have a patent esophagus with an absent LES and muscosal damage. My DeMeester score is 62 (normal range being 14 or less) so the acid is basically free flowing at this point. I was prescribed carafate and Famotadine to take for 2 weeks until things settle down. Just curious about others’ experiences with this. Thank you 😊

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u/AttachedAndUnhinged — 13 days ago

▲ 2 r/Autoimmune

Antiphospholipid Syndrome Questions

I have tested moderately positive 3 times now (each 12 weeks apart) for Anti-B2 glycoprotien antibodies which I’ve learned are related to APS. I have three other autoimmune conditions but no blood clots or pregnancy issues (2 healthy kiddos with normal pregnancies). My rheumatologist seems pretty wishy washy on whether or not that one blood test constitutes APS. He told me I should ‘wait for a clot’.. um, no! Are there other autoimmune conditions that can cause a high B2 glycoprotien result? TIA!

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u/AttachedAndUnhinged — 2 months ago

▲ 3 r/Sjogrens

Lip Biopsy and Pain

I don’t know that I’m exactly ‘pre-diagnosis’ as a rheumatologist (not my regular one) DID clinically diagnose me with Sjögren’s even though I’m SSA and SSB negative. I have a really high anti-centromere antibody and ANA. Since I’m not *really* showing any signs of scleroderma yet, he said it had to be Sjögren’s. My regular rheumy was like, ‘nope, do the lip biopsy to be sure.’ I had it done on Monday and it still hurts like crazy. (It’s been 4 days). I’m wondering when I should worry. The pain is managed by Tylenol, but ow. I also have T1 diabetes and Addison’s Disease so I’m super worried about infection. Any experiences would be helpful! Thank you!

u/AttachedAndUnhinged — 2 months ago

▲ 1 r/AskDocs

Eyes Twitching Partially Closed.. Autoimmune Related?

I have had a weird symptom for about the past month and I’m wondering if anyone can direct me to the right specialist or suggest what might be going on. I’m a 48f with type 1 diabetes (36 yrs); Addison’s Disease (16 yrs), newly diagnosed seronegative Sjögren’s Disease with high positive Anticentromere antibodies (being monitored for additional signs of CREST). I’ve also been diagnosed with a laundry list of things: POTS, ME/CFS, Chronic Urticaria and Antiphospholid Syndrome. I’ve had the eye twitching issue before - but not to this extent. At that time, I was seen by neurology and tested for Mysthenia Gravis - but told that’s not what it is. It’s been a 6 year journey to even get to the Sjögren’s diagnosis!

Here’s what’s happening: my eyes are dry, obviously. I use eye drops three times daily during the day and thicker eye drops at night to manage the dryness. My eyes tend to twitch quite a bit anyway, but this left eye twitches and stays in the half-closed position for a few minutes. If I pull at my eyelid gently, I can get it back fully open… until it starts again.

I’ve attached a pic from this morning. This is what happens when my eye ‘twitches partially closed’. Would love some guidance! Thank you 💙

u/AttachedAndUnhinged — 3 months ago

▲ 6 r/Sjogrens

Newly Diagnosed - AntiCentromere Positive

Hello! After 7 long years of misery, my rheumatologist diagnosed me last week with Sjögren’s Disease. I certainly have the dry eyes (blurry vision), dry mouth (have already had 4 teeth extracted), dry skin and profound fatigue. I am RF, SSA and SSB negative. I have really high Anti-Centromere antibodies, high CRP and my esophagus is a total mess (severe GERD, no LES, crazy PH levels and incomplete swallows on manometry testing). My doctor said that rarely, the centromere positive antibodies can be related to Sjögren’s rather than CREST (limited systemic sclerosis/scleroderma) but that he can’t rule out scleroderma developing in the next few years.

Fun times!

I also have type 1 diabetes, Addison’s Disease, POTs and ME/CFS.

Has anyone else been diagnosed with Sjögren’s with a positive centromere antibody? I’m feeling a little lost right now!

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u/AttachedAndUnhinged — 3 months ago