Hi fellow Lupies
I was diagnosed with SLE and mixed Cryoglobulinemia Dec 2011. I have had a pred 40mg initially then reduced to 20mg and up and down to 15mg currently and 2000mg Mycophenolate, with Placquenil 400mg. My white cells are always on the high side and lymphocytes low, and low complements. ANA reduced from 1:640 to 0.1. I am not yet in remission but wanted an understanding of what it's meant to feel like once the Lupus is under control and we are in so called remission. What is your quality of life like? what should i expect my symptoms on average to be? will i still feel exhausted? have joint pain? will i be able to work? go out for dinner even without having to do nothing the whole day! i am just trying to understand what my activity levels are likely to be in terms of others experiences. I have yet to find anyone in this country with Lupus and Cryoglobulinemia and am getting battered by the cryo at present due to the cold Any advice would be very much appreciated. I don't have any quality of life at the moment but am trying to hang on to hope that i will feel normal again, well hopefully. I guess i won't ever be the same as i was, always on the go and working full time in advertising and athletic but any hope i can have would give me something to aim towards. Feeling a bit deflated today.
Thank you so much xxx