Have they ever checked for polymyositis?

WOOHOO for finally getting off of steroids. What a task that is, eh?

Do you ever have a rash (not livedo) after being in the sun? I would still highly recommend seeing a dermatologist at a university who is experienced with lupus. Even lupus patients without a current rash have tested positive to a biopsy with immunofluorescence (because of past rashes).

At least consider consulting with one (or have you?).

Did they do a urinalysis at the time of the sed rate draw? Since lupus is so "uppity" and can change on a dime, it's important to have the tests when someone is having symptoms (or other positive test results).

Since you are immunosuppressed, you might have an infection. When I had C. diff, my WBC was completely normal. I'm betting it's inflammatory, though.

This is my favorite article on ESR. If it were me, I'd want more thinking or testing to figure out why your ESR is so high!

http://www.aafp.org/afp/1999/1001/p1443.html

Being sick sucks!

Annie