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?"
A lupus specialist will almost always be a rheumatologist who has had a lot of training and/or experience in LUPUS. So, when looking for a specialist, you will be talking to rheumatologists and asking them about their experience dealing with auto-immune/ collagen-vascular diseases such as LUPUS.
Yes, there are tests that can be run to determine how much, if any, internal organs are involved in your disease and/or if you should be taking medication for those involvements. I agree with your friend in the fact that you must be pro-active with this illness and aggressive with your doctors. But, you should first find out if the tests have already been run before you start thinking that your symptoms are more serious than you thought!
Your best defense is educating yourself about Lupus, its symptoms, medications and treatments. In that way, you can become actively involved, with your doctors, in your treatment and management of this disease.
Keep us posted and let us know how things are going!
Best of Luck
Welcome! Also, your friend might have a unique situation if working through a research school/hospital that not all towns have. I have a Rheumatologist that seems to be well-versed in Lupus, but refers me to the kidney doc for all things kidney related. My rheumatologist in another state dealt with all my kidney problems himself. So, I think it depends on the doc. And a good doc will tell you to get a second opinion, too. I do have pretty severe kidney involvement, and my nephrologist tells me that 50-75% of those with SLE will have some form of kindey involvement;however, it might be so mild that one would not know and/or changing treatment would not be necessary or can range to very active disease, like mine. So do not fear the kindey or organ involvement. It doesn't happen to everyone, and eve when it does, it's not always super bad.
This disease is best taken one moment at a time! Hope things continue well for you!
My rheumatologist specializes in Lupus. He seems to be very well informed. However, I was doing some research and in NYC, the Hospital for Special Surgery has an entire department dedicated to LUPUS & Rheumatology. I am considering transfering over.
does anyone have any suggestions.