u/Top-Neat9725

Hi Sjogren's people. I have a weird/complex history. Short version: I had rapid, severe onset of inflammatory joint disease in late 2023, affecting every joint except my jaw. I was seronegative for everything and got diagnosed with seronegative RA. Spent 2024 trialing and failing standard RA drugs until I got lung inflammation in late 2024 and got put on Rituximab. In late 2025, started developing skin involvement, mostly a malar rash and photosensitivity. Early this summer, photosensitivity and heat sensitivity became really extreme, malar rash became constant, my eyelids turned purple-y/grey, v sign rash on my chest, raynauds-y situation on my hands, weird capillaries in my nails, some vascular stuff. Saw an autoimmune dermatologist who said probably dermatomyositis or lupus, but I'm ANA negative; he ran a myosotis panel and the only thing that came up positive was Anti-SSA52 so now he says Sjogren's is the leading differential. I'm...perplexed? I don't have dry mouth, dry eyes, or dry anything. Nobody has ever mentioned Sjogren's to me. Does anyone have a similar history?

I have a long and complicated medical history that involves autoimmune diseases and secondary mast cell activation. I haven't been able to eat dairy in about 6 years without a variety of reactions, but I recently got put on hydroxychloroquine (for the autoimmune stuff) and now I can eat cheese???? Just like, eat cheese as if I were a regular person and nothing happens? I am delighted and baffled. Has anyone had dramatic improvements in food reactions after starting HCQ?

I was diagnosed with seronegative RA about 2.5 years ago. I had a very rapid and dramatic onset of joint pain with all my joints except my jaw effected within about 6 weeks. My rheumatologist poked me a bit, asked some questions, and said yep RA. Took about 7 minutes. All blood tests were negative, except I had low vit d. I spent my first year failing assorted DMARDs and TNFIs and struggling to function, then got inflammation in my lungs 11 months in and got put on Rituximab. Miracle drug for me, got my life back, no more Prednisone, etc etc. 1 year & 3 infusion cycles later, I developed a malar rash, extreme photosensitivity, chronic hives, and generally became allergic to everything, including my own feelings. Provisionally diagnosed with MCAS, on all the antihistamines, some thing improved but the malar rash and photosensitivity keep getting worse. Had an insane flare that started in June and involved 5 different types of rashes, extreme joint pain and fatigue, oral ulcers, and costochondritis. My rheumatologist is in denial and would like to ignore everything but joint pain, possibly lungs if really pushed on it, and is calling my skin stuff rosacea (3 dermatologists, none of whom diagnosed rosacea, but ok). I saw an autoimmune dermatologist a couple days ago who told me he's almost certain I don't have RA, and instead I have a connective tissue disease, possibly dermatomyotosis or seronegative lupus (I remain seronegative for everything, all the time, it's the worst). I'm waiting on the myositis panel and uh, not feeling chill about the whole thing. Has anybody had a similar presentation? Am I making up my own autoimmune disease?

I was diagnosed with seronegative RA 2.5 years ago and ended up Rituximab because of lung involvement. I started having skin involvement (rashes on my face, chest, and arms, chronic hives) and extreme photosensitivity about 9 months ago. I saw an autoimmune dermatologist yesterday who said he thinks I was incorrectly diagnosed and that I have dermatomyositis (apparently I also have enlarged capillaries in my nailfolds and rashes I didn't know about on my thighs and scalp) or seronegative lupus or maybe both. I haven't really had muscle pain; I have tremendous joint pain in all my joints, tons of fatigue, all the rashes, lung stuff, and extreme photosensitivity. I'm waiting on more blood tests, and in the meantime wondering if anyone here has had a similar presentation to mine.

I've been diagnosed for about 2.5 years (seronegative) and have had a bunch of new symptoms come up over the past 8 months that seem autoimmune related, but my rheumatologist is extremely adamant that she would only like to talk to me about my joints​, to the point that ​I just realized she's not documenting any other concerns I bring up in clinical notes. I'm starting to feel like I probably need a second opinion, because my disease presentation is dramatically changing and she's just like, not interested in new information​. I've been hesitant because she's always responded quickly to messages and treated my disease very aggressively, and it's hard to get into rheumatology in my area (and possibly everywhere?) and also I'm real tired and already see one million doctors. I'm wondering what other people's experiences have been with getting a second opinion and/or switching rheumatologists - worth the effort?

I was diagnosed with seronegative RA 2.5 years ago and had very rapid and severe onset that involved all my joints and my lungs within the first 11 months. I failed 2 DMARDs and 2 TNF inhibitors in the first year, and got put on Rituximab when the lung thing happened. It's worked pretty well until this summer, when I've developed crazy photosensitivity with malar rashes, petechiae, livedo, hives, worsening joint pain, nausea, and serious fatigue. All my providers are thinking lupus but I am negative for every marker I've been tested for (and that includes all the RA markers); the only autoimmune marker I have is anti thyroid antibodies, but my thyroid bloodwork is otherwise fine. I feel like I am going crazy every time I get a new perfect lab result - how am I so sick but also negative for everything? Anyone have similar history, and what did you/your doctors do?

I am in diagnostic limbo at the moment, and I do have all the appointments scheduled, I'm just in the fun waiting and stewing phase. I've been diagnosed with seronegative RA for 2.5 years and in the past few months have developed crazy sun sensitivity (not a known side effect of my medication), a malar rash, livedo (red/purple mottling rash on my legs and arms), and petechiae (hundreds of tiny pin prick bruises under my skin). My rheumatologist is adamant that I cannot have developed lupus while on Rituximab since it also treats lupus, and I'd love to not have lupus, but these don't seem like RA things? Does anyone have RA and not lupus, and also have a bunch of weird skin shit? If so, what was the explanation you were given?

Diagnosed MCAS, also have an autoimmune disease. In the past year I've become super reactive to sunlight, which really sucks ass. I get hives on my face plus wheezing/coughing, headache, fatigue, sometimes nausea. I've started looking at the research for GLP-1s as a treatment for MCAS and it's early stages and not terribly specific - I wondered if anyone here has a history of sun reactions and tried GLP-1s, and if so, did it help your sun reactions specifically?

Diagnosed MCAS, also have an autoimmune disease. In the past year I've become super reactive to sunlight, which really sucks ass. I get hives on my face plus wheezing/coughing, headache, fatigue, sometimes nausea. I've started looking at the research for GLP-1s as a treatment for MCAS and it's early stages and not terribly specific - I wondered if anyone here has a history of sun reactions and tried GLP-1s, and if so, did it help your sun reactions specifically?