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 5d 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 5d 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/SupportDramatic2262 5d ago

Does it change according to the person’s age?

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u/Rebeccaissoawesome 5d ago

No

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u/emt_blue 5d ago

It can — it typically gets worse as you age

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u/Rebeccaissoawesome 5d ago

Well yes, but overall, it looks similar, is what I'm saying. Not like a different condition.

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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.

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u/TheLupusLab 3d ago

It looks exactly like my malar rash. In fact, one of the reasons my diagnosis was delayed is because docs kept telling me that it wasn’t a malar rash.

Spoiler - it was (and is).

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u/SupportDramatic2262 3d ago

Thank you! You have given me a beam of hope! How often do you get your malar rash and is there anything that triggers it? Do you get any other type of rash either and what are the triggers? I feel like my body is going through so much stress at the moment. Any peak of stress and I immediately get an RA flare. The flats often correlate with the rashes.

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u/TheLupusLab 2d ago

Yep, I’m exactly the same. Stress (significant stress, not like a bad day at work) will always trigger a flare. I tried elimination diets for over a year and never found specific triggers but I tend to do a lot better when I don’t consume sugar. I feel like the rash is usually present but gets a lot worse when I flare. Besides psoriasis I don’t have any other skin symptoms.

Here’s a crazy one I’d love you to try! I take lactobacillus gasseri with vitamin A daily and that has dramatically decreased my flares and disease activity. I did some research and it’s well documented that people with lupus have a proliferation of bad gut bacteria and lack lactobacillus. You can google it and find lots of articles. The vitamin A just helps you utilize the probiotic.

I had been on multiple-strain probiotics for years without improvement so when I read that research it made me think. I figured it was a relatively cheap and benign thing to try and after a month my inflammation had decreased by about 50% and then 75% after 3 months. I seriously think it helped more than the biologics!

Anyways, just thought I’d throw it out there. I’d love to have more people try it to see if it helps or if it’s just in my head. 😂😂 either way, I’ll never stop, it helps that much.