Possible lupus: I’m waiting on my next... - Behçet's UK

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Possible lupus

Soph19 profile image
5 Replies

I’m waiting on my next dermatology appointment about the rashes I’ve been getting which they are trying to figure out whether it’s behcets or lupus. I came back from holiday yesterday and about 3 days into my holiday I developed a rash which as worsened each day being in the sun covering my chest, arms and stomach (also slightly on my face). Throughout my holiday it was just my chest and arms but since being home it’s spread down my stomach. I’m not sure whether it’s heat rash? I only went to the Canary Islands so it wasn’t any hotter than around 22 degrees but we had more cloudy days than sunny. Wondered if anyone could relate to my photos.

Thank you in advance

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Soph19 profile image
Soph19
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5 Replies
Dandan15 profile image
Dandan15

Hey, I can relate to your story as I have been in a very similar situation. After 3 years of many symptoms and hospital admissions I have recently been diagnosed with lupus and Behçets. This came after many drs not knowing what exactly was going on. I had a similar reaction to the sun on my head and chest and had this biopsied, which subsequently showed lupus characteristics. It was only then that my blood results went from being classified as ‘SEro-negative’ lupus to showing anti-Ro antibodies and this then led to a change in my behcets only diagnosis. Are you on any medication at the moment? I find that even UV lights cause a similar reaction to this and I often have to wear suncream daily to minimise this symptom. I hope this post was useful and will be happy to answer any questions 😊

Danielle

Soph19 profile image
Soph19 in reply toDandan15

I have had a diagnosis of behcets privately but since then I’m seeing doctors on the nhs and they seem to think it’s possibly lupus. I’ve got a rheumatology appointment next month hopefully they can push my dermatology one forward if they think this rash is related. I had been using spf50 and wearing t-shirts to cover the rash but didn’t help and I’m not taking any medication currently. If it doesn’t go down in the next few days I’ll go to my gp see what they think. I’ve never reacted in the sun like this before it’s my first holiday abroad in 4 years but my rashes started about 2 years ago.

Dandan15 profile image
Dandan15

Also, I can show you a photo of the rash but I just don’t know how to upload them lol any ideas?

Danielle

I have had similar rashes and I was diagnosed with behcets. It seems lupus flares that cause these rashes occur when exposed to prolonged heat but behcets flares in cold temperatures. Hope that helps.

Lorrie profile image
Lorrie

Hello I get rashes like that if I go out in bright light. It doesn't have to be really sunny. Mine then blisters, some of which turn to ulcers. I was tested for lupus which came back negative. The blood tests did show up vitamin D deficiency for which I now have to take medication. I have been told by my dermatologist that it is part of my beçets and not to go out in bright light & especially sunny weather without being totally covered up.

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