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Thread: It's official...

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    Default It's official...

    Well it's official I have SLE. I go back in six weeks she debated on weather to add more drugs to regeim. Currently I am on 400mg Plaquinel and baby asprin for APS. She was thinking about adding cellcept. I have been on Plaquinel for 5-6 months we both agreed to wait 6 weeks to see if the plaquinel makes a difference with some the skin issues I have been having (purpura rash) it seems in the past month they are appearing less frequently. I have been having some type of hive or something she looked at it today and said "that's lupus". If I continue with the itchy rashes and or more purpura she will add cellcept. I'd rather not take extra drugs if I don't have too. There is some or a lot of confusion with some of my records so she is wanting to get all the straightend out. Also trying to locate a biposy of my kidney from like 1987. She is thinking that's when it started. I feel overwhelmed and a bit mad. I asked my old Rhuem if it was or could be Lupus he say's oh no no no way is it lupus. Whatever!!! On a good note my pulmonary function test was good still up in the air on the hematocrit being high but again some records she needs.

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    it is good to have a title for your problems.....
    now time to get on with quietning it down.
    glad to know your new rhuemy is looking after you so well.

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    tgal (11-12-2012)

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    tomcatsgirl, better to have the diagnosis than not. I went undiagnosed too long, and it's done me harm. Now that I go into a medical facility and say "SLE", the other docs now take matters much more seriously. 'Course, sometimes I'd rather not have to deal with the extra attention (and testing), but it is necessary. Like steve.b says, it def needs to be brought under control. I'm now on 10mg predisone a day, to supplement my plaquenil, which has done wonders for my current situation, although there are other aspects of it that are still running rogue, causing other issues. It can be a viscious circle. Like you, I'm in the process of finding old medical records. The difficult part for me is remembering who I saw, and where... tough to do, with the combination of old-man-itis *and* lupus... |;^) - Wishing you well, and continued success with your doc, and the records hunts.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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    tgal (11-12-2012)

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    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
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    Glad that you have a doc that is working for you. We will be here as you travel down this names path. Never forget that your WHL family understands
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    It does feel good to have a "name to it". It answers a lot of questions. I still have so much to learn about all this I guess thats the overwhelming part. Ironically I woke up with purpura on my arms and hip this morning. UGH. I too am so glad that I have found a Dr whom seems eager and interested in "me" and getting me to feel better. I'll be lurking around and asking questions maybe someday be able to pay it forward to someone new dealing with this disease. Have a good day folks!

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