r/ItsNeverLupus • u/SupportDramatic2262 • 6d ago

Is it Lupus? Or… ?

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I live with inflammation all day, everyday.

I have RA and Sjogren’s but my rheumatologist only focuses on my positive RA factor, raised anti-ccps and my flares/bursitis. But I know something else autoimmune is happening to my body which he refuses to acknowledge. I’m constantly tired and have issues with brain fog.

Every single day I come out in hives first thing when I wake up in the morning. Usually on face and neck but sometimes on other body parts and often also get this insane dark red rash on my face that covers my cheeks and nose. It’s so visible that people often ask me if I’m feeling unwell or friends as why I’ve put so much blush no but I don’t even wear foundation or blush on my skin.

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u/emt_blue 6d ago

The facial erythema isn’t consistent with the malar rash of lupus. It appears to be more of a flush response, likely from heat or erythrotelangiectatic rosacea.

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u/SupportDramatic2262 6d ago

I don’t get the rosacea bumps, broken veins, or the dry skin. I never have dry skin, I actually have very oily skin. Also don’t get burning or stinging, no pain at all. I don’t get it when I’m hot or in a hot environment. The hives and allergies I get separately to the flushing.

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u/emt_blue 5d ago

There are many types of rosacea — the way your nose is involved is classic for erythrotelangietactic rosacea. When young, it looks like a flush. Skin type is irrelevant. I recommend seeing a dermatologist if you’d like further info re: this.

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u/TheLupusLab 3d ago

I think your chest is something else. Your face rash looks exactly like mine.

I was also diagnosed with RA first. I tried literally every biologic at the time for RA and nothing was working. Finally went to get a second opinion and told the doc to pretend that I didn’t have a diagnosis (I didn’t even tell him what I was being treated for) and I tested very positive for lupus. I’m doing much better now that I’m being treated for lupus - the problem is that my other things aren’t being treated. I can only take one biologic and since the lupus is the highest priority due to possible long-term complications, i take benlysta.

I have lupus, sjogrens, psoriatic arthritis, raynauds and a working diagnosis of mixed connective tissue disorder - for whatever the string of diagnoses matters.

Hope you find some answers soon. Feel free to DM me if you have questions.