This is my first posting, I'm new here - hope I am doing this correctly
I am newly diagnosed with either SLE attacking my liver or it may be SLE with coinciding autoimmune hepatitis. (My liver biopsy was unusual, so they aren't sure exactly what is going on - was diagnosed after being referred to the Mayo Clinic in MN in February). I am now on prednisone, down to 20mg/day (started at 40mg 7 weeks ago) and just stopped azathioprine as I had a terrible reaction to it (I can go into that if anyone is interested - but moral of that story is this: a high cyclic fever (in relation to what time of day I took the azathioprine) with crippling head/neck and joint pain can be caused by this medication - my local hematologist didn't think it was the meds and would have had me keep taking it and continue being tested invasively for the cause of the fever). I had to google it and contact the Mayo Clinic to figure it out. Scary!) So now I am going to start myfortic (coated cellcept) and hopefully get off the prednisone eventually as I am hating the side effects (can't think, heart pounding, hands so shaky I have poor dexterity, can't sleep, feel ill - no energy, moon face, buffalo hump, weight gain....basically feel as bad as before starting meds, but liver enzymes have normalized, so the doctors are happy)
So anyone tried cellcept/myfortic? Anyone with lupus primarily attacking their liver? Anyone feel like this on 20 mg pred then feel better on lower dose?
Thanks so much for reading and I look forward to finding some people in a similar boat