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Thread: % of you that get butterfly rash?

  1. #1
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    Question % of you that get butterfly rash?

    Just curious...is there anyone else that has been diagnosed with Lupus that doesn't have the butterfly rash on their face?

    I do not (but have other skin issues) and last week I was in the hospital getting ready to go into the OR for surgery and the nurse saw the Lupus diagnosis on my chart and looked at me (with raised eyebrow) and said "You don't have the butterfly rash. Why did your doctor diagnose you with Lupus???"

    I just gave her a generic "I had test results and other symptoms that indicated Lupus. My doctor feels confident in her diagnosis." I was mad at her attitude but "luckily" I quickly changed my focus to the fact that I would be in surgery in 5 minutes. haha

    Do most of you get the butterfly rash?

    Thanks in advance for your responses!

    Ang

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    Default hi

    I am complicated.Have been diagnosed with Lupus then not.Now being tested for it every 6 weeks.I have a light rash,look on my profile.....but is it ever there when i see the main doctor who needs to see it ''NO!''...so im taking that photo with me next time.Its always light.But you dont have to have the rash to have Lupus.Good on you for taking her mind off it.xxxxxxxx
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Default

    What a very strange thing for a nurse to say, and quite incompitant too.
    Not all ppl with lupus have the malar rash

    maybe she was having a bad day or summin or needed to put someone down a few notches, silly ass.

    how did the op go anyway?

    ISDM
    **The next or $ raised WILL be the cure for LUPUS**



    ☺☻If YoU gOt OcD aNd YoU kNoW iT....wAsH yA hAnDs☺☻

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    You should have said..education starts by opening a book and apparently, you haven't opened very many in your field of medicine....

    Oh, by the way I must have Lupus I have the diaper rash..

    Love,
    Oluwa..
    I have Lupus. So *^#@! what.

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    Good one Oluwa,
    I find some of the nurses in my profession can be cold and arrogant. I must apologize on the behalf of the people in my profession who are unprofessional.
    Lack of knowledge is something, as I went through the same skepticism when I was diagnosed.. My response was it was a good thing i was diagnosed by a rheumatologist not by a nurse

    people can be so cruel

    Dassar RN

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Ang123,

    It's been 5 1/2 years since my SLE diagnosis, and I have never, not even once, had the butterfly rash. Like you, I have skin problems, but not on my face.

    About that Nurse, there's that old saying that says-

    "It's far better to stay quiet and be thought a fool, than it is to open one's mouth and remove all doubt"

    You should get that printed up on a business card and give it to this nurse if you ever encounter her again. Sometimes I find it just baffling how some people in the medical profession can be so incredibly ignorant.

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    Default

    I have the rash but not the diagnosis (yet). Like Angel, mine is darker on different days and almost invisible on other days.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    I've never gotten the malar rash on my face, but I do get hives, ezcema and other unexplained rashes on my body. My face would have told that nurse exactly how stupid she sounded, I'm good at facial expression LOL
    Everyday holds the possibility of a Miracle

    SLE, Nephritis, Raynaud's, previous ITP
    Plaquenil, baby aspirin, Flinstones vitamins

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    I don't really have the "butterfly", but more so almost my entire face gets red. Is that considered the malar rash? It comes and goes for many different reasons.
    Lauren

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    Smile Thanks!

    Thanks for all the responses! I thought I remembered reading that about half get the rash/half don't. Why can one person's bad reaction make you doubt yourself?? :P

    Hopefully I won't be back at the hospital anytime soon to see her again but will make sure I'm prepared with a good comeback next time. lol

    ISDM, thanks for asking...the surgery went fine. Recovery hasn't been bad. I had to get my gallbladder removed (damaged from lyme disease). I told a friend that the ONE positive thing about living with a lot of pain on a regular basis is that it makes pain from surgery seem like a breeze.

    Ang

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