I am not sure how to start this thread. First, the lupus I have seems to affect not just my brain but also my joints. Not sure which kind that is. My hands and feet look as if I have rheumatoid arthritis. My doctor has told me that my joints are deteriorating faster than they should. I have been on plaquenil and diclofenic for about 4 years. In an attempt to stop the degradation of my joints the doctor has tried the treatment remicade. The organization that is sponsering this treatment wouldn't accept me when my case was presented as just having lupus. When the doctor submitted just x-rays of my hands they took me. The first treatment was great, I hadn't been able to make a fist with my right hand for quite a while, but after the first treatment I could get my fingertips to touch palms. The second treatment went fine until about 48 hours, after which I could hardly move. I went to see my doctor, because I was afraid of an allergic reaction. He seemed to think that I had just caught an honest to god flu. I was doubtful because my skin became extremely mottled, which is what it does when I have a really bad flare. The third treatment only took 24 hours before my hands swelled up and it was very painful to move them. Each rebound (for lack of a better term) takes about 3 to 4 weeks to get over. Needless to say I have called off any future treatments. I was hoping maybe someone could explain what in the world is going on. By the time I would go for the next treatment the rebounding had subsided enough that when blood was drawn it looked as if the white blood cell count was down.