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Thread: Did u know that.......

  1. #11
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    My butterfly rash can go from mild enough to cover with makeup, to a hot red mess of pustules, but I had no idea that the brown patchy areas around my neck were lupus related! My goodness I learn something new every time I visit here.

    I thought the brown spots were where I had neglected to use sunscreen during my younger wilder outdoor years, but in reality, this area would have been mostly covered. The doc looked at it and never said anything. I massage the area with a sulfur lotion that seems to have lightened it a bit.
    Last edited by AyahsClan; 03-12-2009 at 08:10 PM. Reason: spelling

  2. #12
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    Yeh Rob I agree some "medical specialist" could really do with some research into things before they open their mouth....
    Specially because when u say something it can never be right....
    But hey all good...

    it is interesting to read about the rash because I myself for example have not really got it but I do get discolouration on my face and flaky bits sometimes..... but sometimes it can come and go within hours... the other day I had a little stress and my mate popped round and asked me if I had just been running because I looked so flustered... then a few hours later when the stress settled it kinda went away-ish again.....
    The worse the bad times are the more we appreciate the good things in life..

  3. #13
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    I have never had the malor rash either, but the dark stuff on both cheeks and one side of my neck, yes. Can any of you with the dark pigmentation feel yours? I Mine felt like lite sandpaper and itched..at least at first.
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  4. #14
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    Oh btw...mine, the part that itches and I can feel has almost gone away because of the high prednisone I was on. I can also say it seemed to be sun related....
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  5. #15
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    Mines weird, it doesn't swell, but i get sores and its very red (when I flare). Although when I was like 13-16 I had real bad acne, so have always had a bad complexion and wasn't until my Rheumy pointed it out that I realised! I just assumed it was natural, but then when I thought about it, its only red when I'm ill, usually I have quite good skin. Its started getting worse though, I get like really itchy sores on my skin :S. Probably will be made worse over the summer as I'm going to various places including Greece which is always sweltering

  6. #16
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    Default Haven't been diagnosed but so understand where you are coming from!

    Hi. I have yet to be diagnosed. Had seizures at 15 and a 2 yr bad depression and had symptoms on and off of just not feeling good for years. This past september everything started to come in full circle. I too have gotten a rash. Its flat and can be from pink to dark red almost reddish-purple. On my nose and cheeks and sometimes circles up onto my forehead and sometimes on my arms and chest. Theres no bumps/pustules and it only lasts hours at the most. I am affected by sun, heat and lights which are the major causes, emotional upset and it comes and goes when im flaring although every flare is different. I have always been sun sensitive but its here recently the fluorescent lighting is hitting me hard. I get a rash that looks just like a sunburn but it goes away within a day and it even burns although everything feels like its coming from the inside. The only thing I have been diagnosed with so far is raynauds. I have many other symptoms. So maybe as you all say there ARE more people with the rash...but are they the people who aren't even diagnosed and dont know they have it? Something crazy to think about Hope you all are well! -Brit
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
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    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  7. #17
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    Interesting post. I have never had the butterfly rash. The only rash I ever get is when any part of my body is cold, that part turns bright red and itchy. Yet, all the literature leads one to believe that the butterfly rash is an important part of the dx of lupus, along with the ANA bloodwork. The thing about lupus is, it's so variable and hard to pin down so I'm not surprised that 70% of people don't get the rash. What I don't understand is why they mention it so much in literature since only the minority get it?
    SLE, SJS, vasculitic neuropathy, Degenerative Disc Disease, Chronic Autoimmune Urticaria

    Plaquenil, Imuran

  8. #18
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    Quote Originally Posted by Jesse View Post
    Interesting post. I have never had the butterfly rash. The only rash I ever get is when any part of my body is cold, that part turns bright red and itchy. Yet, all the literature leads one to believe that the butterfly rash is an important part of the dx of lupus, along with the ANA bloodwork. The thing about lupus is, it's so variable and hard to pin down so I'm not surprised that 70% of people don't get the rash. What I don't understand is why they mention it so much in literature since only the minority get it?
    I think because it is an easy and disease specific symptom. For example, one can have rosaecia on the face, but it is not like the butterfly rash. One can have rashes, acne, or any other type of skin problem, but nothing is exactly like the butterfly rash of lupus for those who get it. I could be wrong but I don't think there are any other diseases that present exactly like it.

  9. #19
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    The hyperpigmentation on my neck does not itch and is not raised.

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