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  1. #1
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    Default I have a few questions?

    I was diagnosed Then un-diagnosed roughly ten years ago, I have had constant flares that come and go but have always been tolerable. My doctor at the time made me feel like it was all in my head, to the point that I didn't want to see another Dr. about it. My questions are can lupus of the skin turn into lupus of the organs, Sorry I am not up on the medical terms. The reason I ask is I have been having some issues with pain in my belly, They found a spot on my trunk and Celiac Atery and some narrowing of the artery. I have had a bunch of tests and now diagnosed with Arteritis. Could lupus do this. I feel just like I did ten years ago Its like they do not care. they put me on max dose Prednisone for up to 3 months if it doesnt work then surgery for the arteri. Wondering about the steroids How much harm they may cause. Thanks for listening just looking for a little feed back. I am very frustrated.

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    I get so sick of hearing about the "diagnosed and then undisguised" crap. Half of these doctors have no clue! There are several types of Lupus. The most common 2 being Discoid and SLE. Discoid is "the skin one" that you referred to. SLE is the one that can attack anything, even the organs (there is one in the middle too but I am trying to answer your questions. People with Discoid Lupus can find later in life that they actually have SLE or get SLE in addition to Discoid. Keep this in mind also, many people end up with whT we call "overlapping diseases". This means that it could still be simply discoid Lupus but another AI disease is attacking your belly.

    As for your question about the steroids, 3 months worth won't hurt anything. Now, when you get on rather high doses for years as some of us have had to do, major complications can arise.

    Keep us posted on what happens and know that we are here for you
    Mari

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

    ~Winston Churchill~







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    hi warden, tgal answered very well.
    so i cannot really add anything.
    but i did want to say hi.

    HI

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    Hi steve.b, Thanks tgal for the reply I will let you know as I do I see the doc on the 1st and might have more info or answers. I hope. this Prednisone is the worst med I have ever taken. I hope it is not long term. Thanks again.

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    Hi and welcome to WHL.
    I agree with Mari - the diagnose/undiagnose thing is rediculous, but many of us have been through it.
    Don't be shy about getting a second or third opinion. I've found that different rheumys have different approaches.
    Find one that works for you.
    Hugs,
    Marla

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    Well, Not sure what I am feeling or if I understand What is going on with me, I will do my best to explain what my Vascular Dr told me yesterday 98% positive for systemic lupus, with Lupus aortitis the lupus is narrowing my trunk artery and celiac artery, He put me on the steroids to make the pain and inflamation go away. It has not gone away, Now he says it just a band aid for the artery and have to be weaned off as soon as possible to be put on some sort of cancer treating drug? he said only a rheumy can do. they are in the process of setting me up with a new rheumy. but could take a few weeks, I have to stay on the steroids till then, I can say this steroids are the worst thing I have ever taken and they are not working. so many bad side effects. I am not looking for sympathy so many have it much worse and I know that those with lupus live a normal life with lifstyle changes with rough patches, I am not worried about long term i know i have to make changes to keep it under control and doctoring. but I am scared about my artery and that the Dr can get the lupus to leave it alone. Thanks for listening, I am not very good at this. and you are welcome to ask question. and i might learn more about all of it.

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