Lupus Support Group

Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.

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Butterfly Rash

This may seem like a dumb question...
As many of you may know, I have tumid lupus which is mainly confined to the skin. I break out in very itchy rashes. Sometimes my cheeks will get real red and inflamed and hot to the touch. There is not a "raised" type of rash and it goes away pretty quickly. It happens if I get nervous, anxious or overheated.
Does the butterfly rash just occur with people who have systemic lupus?
Anyone have any ideas? Thanks.

Replies

deleted_user
deleted_user

I read that there are many types of rashes for lupus but the most common one was the butterfly one. I get a rash as you do except its not dark red its light but noticable. I understand you can get a rash with different systemic disorders. As for me sle has not been ruled out as of yet but there is a systemic problem going on. Hope that helps.
earthwalker
earthwalker

I have SLE and I have the malar rash, it is constant, not particularly raised but definitely there! There is also a veined appearance to mine. It does not itch or ooze, it just "is", sometimes it feels hot, but it is not unbearable. Just looks unsightly. I have a sallow complexion and it is more noticeable if I have been outside or have a hot shower. I get marked skin, but it does not itch, just looks and feels like a scald, these "lesions" come and go and turn up anywhere.
I have been prescribed a steroid cream, which does help. I think we all get slightly different effects with Lupus, possibly due to severity and the appearance would depend also on individual skin type and complexion.
deleted_user
deleted_user

I don't have any answers here. But I have a nother QUESTION... Does anyone know how LONG the butterfly rash lasts? I have very similar symptoms as VirginiaAnn, and i DO have lupus. But I don't know what my rash is. My rheumy is awful (I'm trying to get another) and isn't helpful about this (even though I'd taken PICTURES to show her!). I am try to decide, based on the length of time that I have the symptoms if it is the malar rash or if it is something like rosacea (my doctor actally called it my "Celtic coloring").

Mine seem to happen 4-5 days a week and last 3-8 hours at a time. Sound familiar? I feel like if it was the butterfly it would last longer...
earthwalker
earthwalker

My "butterfly" is permanent. Just stands out a little more when flaring, or after hot showers or humid weather. I cover it all the time....stops people commenting or asking if I laid in the sun too long....
deleted_user
deleted_user

The only symptoms I had when I was diagnosed was the "typical butterfly rash" and some fatique and weight loss. The rash,which extended from my nose to my cheeks looked like I had a very bad sunburn and was slightly raised. It went away after I was treated with very large doses of prednisone. Throughout the years I've had various rashes, but never the original pronounced butterfly.

Hope that helps.

Dale
kshort49
kshort49

I also have a similar rash, and the doc's can't really tell me what it is. I can feel it starting-my face starts to get hot, and after a short while, it feels like I have a bad sunburn. It's red, and hot, and the skin feels "tight". It also lasts a few hours. I don't know what triggers it-sometimes exercise, sometimes nothing. I notice it a nighttime-sometimes it wakes me up cause it feels hot and sore. I hope you will be able to find out what this is-it's very uncomfortable. Good luck!
deleted_user
deleted_user

I have the rash too. It never goes away. It does get brighter in heat and after hot shower or if I drink alcohol. I also have painful joints anf fatigue.
deleted_user
deleted_user

Can you have Lupus without the rash? Typical butterfly rash?

I just deal with constant chronic hives.
Still waiting to find out what is wrong with my immune system.
whitsinn
whitsinn

VirginiaAnn, I have the same type of rash. I do have SLE, but it is in remission right now. Sometimes my rash appears without warning, like I've been out sunbathing, and it will leave as mysteriously and quickly as it comes. One of my Rhuemy's told me that Rosecea will not appear, disappear, and reappear like that. Then another Rhueumy told me that she was at a Rhuematologist meeting with other docs, and a dermatologist was there with pictures of rashes, and over half the rhuemy's misdiagnosed the lupus rash as being rosecea. Interesting, huh?
deleted_user
deleted_user

Can somebody please help me? I am 35 and I have LEMS (Autoimmune Neuromuscular Disease, Lambert-Eaton Myasthenic Syndrome), Raynaud's and Thyroid Disease. A few months ago, I broke out in a very bad rash on my cheeks, nose, ears, arms, neck and legs after brief sun exposure. It felt very hot and sensitive for about 4-5 hours then faded slightly, but has never completely gone away. I had the outbreak just on my face (Cheeks and nose) again 2 weeks later after being in the sun and having 1 glass of white wine. Now, I have slight scarring on both cheeks, like the capillaries are broken. I was tested for Lupus and my ANA came back NEG. My Rheuma says I do not have Lupus, but I am not convinced, as you know, All autoimmune diseases clump together. I have been feeling more horrible than usual lately and have been telling Docs for 2 years that something else is wrong, other than LEMS...they keep telling me, "It's just LEMS". can anybody help? Should I keep pursuing this? I have oics- how can I show them? Shouldn't I get a Skin Biospy? What other tests for Lupus are there. How accurate is the ANA? THANK YOU!