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LUpus Patients Understanding and Support
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Mystery rashes - autoimmune related?

Hello, I just discovered this forum via reading someone’s post about their lacy red rash on their legs. I’ve been diagnosed with fibromyalgia, chronic venous insufficiency, Raynaud’s (primary) & UCTD (undifferentiated connective tissue disease) with a positive ANA, among other issues & symptoms.

All the replies to this other person’s post focused on sun exposure as the cause of the lacy red rash, but I disagree.

I too have sun sensitivity, where I get a rash/burn similar to malar, but more like raccoon & the front/sides of my neck. Sometimes the burns are so bad I’ve gotten blisters, but the skin always peels off in little bits (not like with a sunburn). I realize this will sound odd, but it feels as if my skin is burning from the inside-out. I’ve even had an episode that happened while I was at the gym one morning, which leads me to believe it’s triggered more by sweat than UV, or maybe a combination of both.

This burn then leads to intense photosensitivity, where I have to draw the blinds during the day, as any sunlight burns my skin intensely. (Again, not a burn like a typical sunburn, but painful *underneath* my skin). It usually takes 4-7 days before the photosensitivity lessens & the burns begin to heal. The burns are incredibly painful, my skin feels very tight, raw & tender.

I also however get this bright red lacy netting-type rash on my legs and arms, but I don’t believe it’s from UV exposure, it’s from the *heat*. When I first started getting these rashes, it was from being in the sauna, not the sun. It happens periodically when I’m outside as well (usually when my legs are covered with pants), but it’s from the heat, not the UV exposure. It only happens when the heat gets intense (only when I’m sitting in the heat, not if I’m walking around).

The dermatologist I waited for months to see gave me no answers. My lacy rash doesn’t actually hurt or itch like others have mentioned. It usually goes away within 30 minutes & leaves no lasting marks.

It does look like the photos I’ve seen online of livedo reticularis. The part that confuses me though, is mine is definitely ONLY caused by heat. It says livedo reticularis is caused by cold & resolves with heat.

I’ve attached photos in hopes that someone else may know what these two different rashes are, and if they’re related. I’m a believer in natural treatments, so if anyone has any recommendations, I’m definitely interested. Thanks for reading

(It seems to be allowing me to only upload one photo. I’ll see about adding additional ones :)

2 Replies
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Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

Rashes are notoriously difficult to diagnose. Levedo reticularis is the lacy-like rash seen in SLE & APS/Hughes' Syndrome. I have this rash. Livedo reticularis is often considered a benign rash that occurs or becomes more evident during colder weather. The condition is caused by spasms in blood vessels that produce a net-like pattern of purplish lines. Livedo reticularis can cause other complications, including: ulcers.

There are numerous rashes, such as a V-Neck rash, which I have and is controlled thanks to hydroxychloroquine.

Systemic Lupus Erythematosus is one form of lupus. There is another disease called Discoid Lupus or Lupus of the skin. The chance of discoid lupus developing into systemic lupus, is low. It presents as a red, scaly rash, which, if untreated, can cause scarring of the skin. Systemic symptoms are very rare. SUBACUTE CUTANEOUS LUPUS (SCLE) presents as a red, sometimes scaly, rash, also in sun-exposed areas, notably the V of the neck, arms and upper back. It is more common in women.

No one can diagnose your rash other than a dermatologist who can take a biopsy. My advice is to contact your dermatologist who can take a biopsy as rashes may look alike!

If you are interested, we also have another website called the LuPUS Message Board where you can also post questions and talk to other people. There is a forum dedicated to Lupus of the skin. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

Please use the following to complete the Date of Birth entry: nn-nn-nnnn where n=number. Thus, if your birthday is 5th May 1968, enter: 05-05-1968. Use the “-“ separator and not the “/“.

Finally, please go to: lupus-support.org/ and Sign Up.

I look forward to talking with you more!

Sometimes we need to talk to people who understand and who are not family or friends.

With good wishes!

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

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Hi, I have a similar rash on my neck for nearly a week. I think it was triggered by Valporol on my neck as I put it 9n at night and went out am with dogs before a shower. There may also have been some residual oil from a massage. However I wasn't long out. Maybe it was heat too. It's still very sore in one place and as you describe - deep. Its like sandpaper too and red. I've used Eurax for the itch and now mostly Euricin for moisture. I'm fed up as away to Greece on a cruise Friday. I'll he covering up. I thought it would have improved faster as other wise would seen a dermatologist.

I have two (known) auto immune diseases, low platelets and Hashimoto's Thyroiditis.

What next..

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