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Thread: Discoid Lupus!!!!

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    Default Discoid Lupus!!!!

    Hello everyone,

    I am very new to this site and I have been reviewing the posts to see what everyone has to say about this Lupus thing. I have had a little spot on my left temple for some time now that tended to raise and flake, but it never hurt and it wasn't often. I did see my dermatologist about it a few years back, but she didn't know what it was and I would not allow biopsy to be done. Then, in May of this year, my sister and I went on a trip to Las Vegas and I had a ball. When I returned home, everyone began noticing that my nose had darkened very much. This is what led me back to the Dermatologist. I gave her permission to the biopsy because the spot had raised again as well. The results were staggeriing to me, as I am otherwise very healthy. I was sent to my eye doctor and then to my medical doctor for blood work to determine if it was Discoid or SLE. I was placed on Plaquenil 200mg x 2 per day and was prescribed Cloderm for facial rash and a bleach cream for my nose. I've been doing everything as advised, but decided to sit out in the sun for about ten minutes over the past weekend and found that before the night was over, I had a rash. I began the Cloderm again and the rash went away. Outside of the rash from the sun, I am not experiencing any of the other symptoms I have been reading about. I'm beginning to wonder if starting the medication made me sensitive to the sunlight. I'm not in denial, but I feel perfectly fine. Can anyone relate to me? I just feel like if I keep the sunscreen on and stay out of the sun and take the medication, I'll be okay. Is this wishful thinking? Excuse me for rambling on and on...

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    When I was first diagnosed I assumed I had discoid lupus as most of my symptoms were skin related but as I learned to protect myself(long sleeves ,sunscreen, spf clothing etc) I learned that other issues I had were lupus related. Sun exposure doesn't have to cause sunburn or rash to iritate my lupus.

    I do have sle and it can show itself in many different ways including muscle and joint pain-but don't get me wrong I take my meds,stay out of the sun and for the most part my lupus is manageable.
    Take care and welcome Niall

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    Hey MadameKK, and welcome to the whl forum. Discoid can indeed stay just discoid. Someone will know the stats, but if that's what you do have, there's just a percentage of folks with it that do go on into sle. Just don't ignore other symptoms if they pop up. You know now to avoid the sun. Meds *can* make you sun-sensitive, but don't quit the meds and expect to *not* still be sun-sensitive. When all this stuff started hitting me, while it wasn't overnight, it was a rather rapid change. It can be a "shock to the system", so to speak. I went from having no issues in the sun (I worked outdoors at the time), to being so sensitive, that I'll burn easy, just driving in the car from work, if I'm not careful, and then I'll break-out.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    Hi KK,
    Welcome to WHL. Jmail is right - Discoid might just stay mild, especially since you are on Plaquenil already. I started with only those pesky sores that no one was sure about. After six or seven years I had a lot more symptoms and was diagnosed with several autoimmune issues. Now that I've been on Plaquenil for a few years, the skin issues are well under control. I wish that a doc would have started me on the Plaquenil when skin issues were all I had.
    Hugs,
    Marla

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    hi kk,
    i am glad you only have discord, and it is mild.
    please take the time to learn about your desease.
    it is very possible that it will not worsen.
    as you have started medication for it.

    but as the others have said..... dont temp trouble by doing the wrong thing.
    only education will teach you what is right and wrong for you.

  6. #6
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    Thank you all for your responses. I am following my doctor's advice and yours; that's why I decided to join the Forum. I will stay on the lookout for anything that is unusual. And I have taken great measures to protect myself from the sun. I visited a wonderful website called sungrubbies.com and purchased the most amazing sun hats and sunbrella. I keep myself covered with suncreen and I take the medication. I have even gone on to make my children and my family aware of how important it is to protect themselves from the sun's harmful rays.

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