Hi new here
Hello - Looks like a nice forum, with lots of activity.
I've had lupus since 1983, initially diagnosed with ITP, but within a few years I started having lupus symptoms and was diagnosed officially with lupus in 1983. I also had APS (lupus anticoagulant) with refractory ITP. My platelet counts were very low, at 10-30,000, regardless of treatment, although I was also clotting at low counts, so required anticoagulation. This resulted in chronic internal bleeding, but without anticoagultion or if my INR was too low, I'd clot. I've had multiple pulmonary emboli and severa DVT's, with an episode of CAPS which resulted in a chronic clot in my right leg, which extends from just below my groin, to just above my ankle. I also had autoimmune anemia and vasculitis. Basically adding each new organ involved lupus symptom every 4-6 years.
I was pretty much a mess and walking a fine line. In 2007 I had a stem cell transplant at North Western Hospital in Chicago. It took almost a year to see normal platelet counts and negative lupus anticoagulant and negative ANA, but eventually I did experience a remission. I still have the chronic clot, but have not had a new clot and have normal platelet counts since transplant. My ANA is still negative, although I do have a positive Sm and RNP antibody and recently began experiencing chronic hives and itching, with dermagraphia (skin writing). I'm on 4 antihistamines for that, along with steroid nasal and eye drops. I take 400 mg of plaquenil daily, 5-10mg of prednisone for lupus.
I just had a 3 year follow up at Northwestern for the transplant and completed a 24 hour urine collection. I've never had kidney involvment with my lupus and 24 hour urine collections never showed elevated protein, but this one has shown elevated protein and that has me a little freaked out. Especially since I've had an increase in joint pain and fatigue and with the chronic hives, I just think something is brewing. My lupus tests are the same, my C3 C4 are not low and actually C4 is elevated. The doctor didn't mention anything about the protein in the 24 hour urine, so I guess it's not a big deal, since everything else looks pretty good, but I'm curious when do doctor's look at the elevated protein in a 24 hour urinealysis? Does anyone else know what a doctor looks at beside the protien in the urine, to consider kidney involvement?
Thanks so much for any informatin you can provide.