07-21-2006, 07:55 AM
I am pretty new here and have only posted once. To catch everyone up I was in the hospital last week for a week because of Vasculitis and Probable Lupus Nephritis. While in the hospital I was given high dose IV steroids because of the severe headache, edema, high blood pressure and proteinuria. This made my kidneys work great I guess because I was really able to urinate alot! When I left I was feeling better, my BP was down, edema and headache gone. When I got home I weighed myself and I lost 7 lbs while in hospital. My doctor tapered me off the high dose steroids and I was supposed to get down to my regular dose of 20mg per day. However yesterday I woke up with pounding headache, BP 140/90, short of breath with exertion and I had gained 5 pounds back in 4 days even though I have been following my weight watcher's diet religiously. Called doc who wanted to see me right away and you guessed it, protein in my urine again. I can't get into my nephrologist until Sept. 1, so off to the rheumy I go. I know this is long but I finally am getting to my question. Before I got sick, I was trying to very slowly wean myself off the steroids as I know they are not good for me. I was decreasing by 1mg every 2 weeks and was down to 18mg. I really would like to stay on lowest dose possible. I am afaid my rheumy will look at my labs and increase my dose. Do any of you have any other suggestions of something I can do for Possible Lupus Nephritis besides increase steroids? I want to be armed with something to say when she says to up the steroids. Any help would really be appreciated.