lupus looking butterfly face rash, but negative test results

Discussion in 'Fibromyalgia Main Forum' started by texasratgirl, Jan 23, 2007.

  1. texasratgirl

    texasratgirl New Member

    just wondering how many of you with cfs/fm, get the "classic lupus butterfly face rash"??

    I get it all the time, have been tested for lupus about 10 time, each coming back negative.

    Even my allergist has had me tested for it. It too came back negative. Now he thinks it is my makeup. I don't think so, I am using Bare Minerals.

    If any of you do get it also, is there anything that you do that helps it to go away???

  2. michele3322

    michele3322 New Member

    I too get it and many other systems of lupus so I was told it is clinical lupus. because of the ana score it was on the boarder. I also know that the antibody can hide in your bloodstream so it is very hard to get a positve out come. one day it is there and may never show up agian.
  3. jake123

    jake123 New Member

    My gynecologist told me to get tested every year for lupus. His nurse got tested one time for it (neg.results) and then never did get tested again. Ten years later, boom, she was very, very ill.

    One question - What does C3 and C4 have to do with lupus?
  4. texasratgirl

    texasratgirl New Member

    i looked ... under types of lupus, but didn't see clinical lupus.

    could you please tell me more about it??


  5. bunnyfluff

    bunnyfluff Member

    only 30% of ppl test "positive" for Lupus, even though they have the disease.

    There are several types of Lupus, and several tests, and it may take 10 years before the ANA comes back high enough to be positive. Go to the Lupus website, and you can sign up for the newsletter. There is a lot of good info out there. I thought I had Lupus for awhile- I get a weird face rash, it was being treated as acne, but I think it may actually be roscacea, but I am keeping an eye on it.

    The butterfly rash is a pretty classic symptom, with or without the test coming back positive right away. The good news is, if it is involving the skin, it usually doesn't spread to the organs, so you just need to learn how to protect and care for your skin to help the symptoms.

    Hope this helps some.
  6. Jo29

    Jo29 New Member

    Hi, do you only have the butterfly rash, or is there a rash on your arms also.

    I have Lupus and also have the classic butterfly rash on my face, but I also have a rash on my arms that looks very similar.

    My dermatologist took three biopsies on my arms instead of my face and they came back positive for Lupus. Then later my ANA came back positive.

    I was suspected of having Lupus by every doctor I have.

    The Lupus is attacking my skin, but I have SLE and not discoid Lupus that attacks only the skin.

    I am on Plaquenil and that has helped with the rashes a great deal. Sometimes when I am very tired and run down the rashes come back with a vengence.

    The rashes are also very hot to the touch when I have them.
    I actually look sunburned when the Lupus is active.

    Someone mentioned clinical Lupus. I was suspected of having that at first also. I was taken off of any meds that could cause the breakouts. I was on HCTZ, (hydraclorathyazide) not sure about the spelling. Basically it is a water pill. The rashes did not go away, but were actually getting worse.


  7. Daisys

    Daisys Member

    I am being treated for rosacea, and get that butterfly redness often. I've tried metrogel, finacea, and rosac. They don't control it.

    Years ago, when I felt really bad, twice after being out in the sun, it got much worse. It had the butterfly pattern, but looked like someone hit me: under the eyes I would be purple and swollen, and it took a couple of days to go away. I never went to the doctor when it was that bad, because I was afraid they'd put me on steroids.

    I do wonder if I'm borderline lupus, because of that, and the unrelenting fatigue. Does rosacea ever get swollen and discolored like that, or does it stay red, with the occasional acne bumps? Does anybody know?
  8. bunnyfluff

    bunnyfluff Member

    see, I don't know, b/c mine was horrible after being out in the sun for an afternoon, which made me suspect Lupus. I get these itchy fluid filled bumps, not zits, but they hang around, and now look like blood blisters- for months afterward, probably more than scaly in the long run, so I have no clue.

    But, then I read that rosacea can react that way, and also can itch after eating histamine producing foods, so I am now leaning towards that myself. Mine can be a little scaly, but not like the psoriasis my mom had.

    I do not think it is acne, which I was being treated for, but I was not getting results- it seemed to make things worse! I had horrible bumps on my chest in the summer, also, and I tried lots of stuff, and went to one of those places at the mall that carries the natural cleansing products and got some cocoanut scrub that is very gentle- the girl said to be sure there was no soap or salts, and that cleared up the body problem.

    Also, I used their cocoa butter cream afterward, and it was very soothing. Sunblock also seems to be key for any of these conditions. But of course, non-greasy. Who can recommend that???

  9. Daisys

    Daisys Member

    Thank you for replying. I'm in the Pacific Northwest, so a day in the sun here is like a weak winter sun with a slight overcast somewhere else, LOL. And I wear skin protection every day, so I don't know what I'd look like with some real strong sun.

    When I say acne, I'm talking about the rosacea acne, which is different from regular. There's no whitehead or blackhead type, and it's just, for me anyway, an irritated, red raised area that gradually goes down.

    What seems to trigger the butterfly rash, besides sun, is eating/drinking something hot, any alcohol, strong emotion, and some food, which I haven't identified yet. I'm pretty careful to avoid chemicals, hardly ever eat convenience type food.

    Coconut cleanser sounds real good. I wonder about using coconut oil? It's a good germ killer in it's own right, and there's seems to be some sort of infection involved. Hmm...maybe I'll try that since I have it here in the house.