Question
I am 44 years old. I have had a history of autoimmune illness since age 18. First I am hypothyroid, then 10 years later I was diagnosed with Addison's disease. Again about 10 years later I began to feel unwell, and was diagnosed with auto-immune early menopause, 3 years later a lip biopsy confirmed secondary sjogren's. Bloodwork at that time also diagnosed Primary Billiary Cirrhosis. Lupus was discussed by my rheumatologist but never diagnosed.
My life is a balancing act and at times, sometimes for months I become very ill. (other times, unfortunately much less often, I am very well) When unwell I feel inflammation throughout my entire body from my brain, eyes, muscles, joints and GI tract. When I am unwell I have very red cheeks, neck and chest symptoms which are not there when I am feeling well. My temperature fluctuates from hot to cold, my muscles ache and become stiff and have sleep disturbances. I have been given no clear reason for these flare ups. I have been told that my auto-immune system is causing the inflammation. Is this not what lupus is? My latest auto-immune bloodwork was negative for anti-Ro and anti-Sm and Rh but showed a high SED rate. That is consistent with other times that show the SED to be 3 times what it should be, yet inconsistent with past bloodwork that showed positive anti-RO and anti-SM. Can antibody tests change or have the tests themselves been incorrect? At this point I have been told to double my dose of prednisone from 7.5mg daily (for the Addison's replacement) for at least one week during a flare up and had been put on hydoxychloroquine starting at 200mg in Nov/06 daily and recently been told to double that. I would value your opinion and or recommendation.
Answer:
We don't always understand what causes a flare and many people often have an undifferentiated connective tissue disease (CTD). Primary biliary cirrhosis is associated with many CTDs, especially Sjogrens. Autoantibodies can fluctuate over time. It would be important to rule out infection when these occur, but if they are always the same, this would be very unlikely. Even without the most firm diagnosis (ex overlap with Sjogrens and other connective tissue diseases), the medication you have been prescribed (plaquenil) is certainly worth a try.