Posted 10/19/2007 5:45 PM (GMT -6)
Nice to meet you! I wish you weren't dealing with this awful disease process....
I've been on prednisone for almost 8 years now. It sounds to me like you need to stay on that higher dose for a while. The taper you were on might have been too quick. It's a good sign that you need the prednisone higher if you all of a sudden feel crappy.
I think your swelling is more likely due to the kidney issues than anything else. Lupus itself won't create that kind of swelling or puffiness unless your kidneys are involved. I'm surprised too that your doc didn't jump on the fact that you had protein in your urine, a high sed rate and all this swelling. That screams kidneys...
It's good you're seeing them in early November, but that is still 2 1/2 weeks off. I'd call her office and see if going back up on the prednisone is a good idea. Also, remember that our sed rate is a very mediocre indicator of inflammation unless the numbers are really high. It won't tell us the truth. It's not a good test to rely on. Go with your symptoms. Lupus is wonderful at tricking us with our blood tests!
Keep us posted,
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus