A friend of a friend called me today to offer advice as he has been through a lot of lupus with his wife and his sister. Said the most important thing he could tell me was to find a doctor who specialized in lupus - not "just" a rheumatologist. Also that it was important to find out if my lupus affected my joints, my organs, or both. I thought you just had to wait and see, but he says a specialist can tell me.
I was diagnosed in October with lupus, Sjogren's and Raynaud's. Looking back, I have had the last two for many years, just not diagnosed. Now taking 200 mg hydroxychloroquine 2x/day. The flares I have had so far have been mild (maybe because I'm 60?) and a medrol taper has worked so far, though not as well the last time.
Right now I am in my fifth flare since March. Also several UTIs. Prickling sensation on my cheeks, and several occurences of a red lupus pattern that went away after a day. My caller assured me that his wife started out just like this 3-4 years ago, and is now looking at kidney failure. She is 56. Her lupus specialist (found through a big-name research hospital) got her into a study for an experimental drug that seems to be helping. Steroids had stopped working for her.
I had assumed that I was lucky to have a mild case, but his call shook me up - enough to make me search out this site. And thank you for it! I know every case is different and unpredictable - the perfect disease for a control freak like me. Has anyone else heard of a "lupus specialist?"