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Thread: I don't get it

  1. #1
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    Default I don't get it

    I am so confused! I have SLE and it started with joint symptoms. By the time I was diagnosed and my kidneys were checked they had endured years of damage and were very scarred. I was however told that there was no current inflamation although my creatine and proteinuria responded to treatment with CellCept and Prednisone.

    Ok so now 2.5 years later my kidneys are pretty stable at about 50% function. Now I am having several other problems like Psuedotumor Cerebri (basically hypertension in my skull), Thyroiditis and Pancreatitis. Now here comes the confusing part, my docs seem to think my Lupus is inactive and these other problems are separate issues. They think this because my kidneys are doing decent.

    I just don't get it, it seems to me that inflamation in 3 different parts of my body is too big of a coincidence. I am just having a very hard time accepting that my Lupus is inactive yet I am all kinds of inflamed. I am told that Lupus almost always attacks the same organs but isn't it more likely that it just decided to attack my CSF, thyroid and pancreas instead of my kidneys this time around? Maybe the CellCept is protecting my kidneys but not so much on my other organs? Has anyone else had Lupus change what it affects? Doesn't a Lupus flare make more sense than 4 separate diseases?
    Kendra Isola, CLEAR Co-Founder

  2. #2
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    Default THIS IS PART OF WHAT MAKES LUPUS SO CONFUSING

    You are right that all three conditions can occur as a complication of lupus - however, both psuedotumor cerebri and pancreatitis can also occur as a side effect of steroid therapy, and many lupus patients take steroids. Plus, it isn't unusual for lupus patients to have more than one autoimmune disease - it's like our screwy immune systems make us a target for all the autoimmune problems. Many lupus patients also have autoimmune thyroiditis, others may have RA, diabetes, polyomyositis, sjogrens syndrome, and so on. So it's like figuring out the chicken and the egg to tell what's causing what.

    If you think the current problems are related to active lupus, your doctor may be able to tell with some lab work - your C-reactive protein or sed rate might be high or your complement levels off - any of which could be an indication of active lupus. It's certainly a good idea to discuss these concerns with your doctor. Unfortunately, the disease pattern of lupus rarely makes sense.

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