I just joined this group and i am so glad to find a forum where I can ask questions and share. But I am so sad, scared and confused. (first of all I think the doctor should tell me in person or on the phone, not the nurse in an email sent just as the office closes so now I get to spend the whole night worrying about this).
Let me explain. I was told I probably have autoimmune hepatitis due to lupus. Blood tests showed elevated liver enzymes, ANA and ASMA, all markers for AIH. (no sign of AMA). Had a liver biopsy and now I am told it's PBC which no one mentioned before. So of course I Google it and now I am really confused. AIH or PBC or both?
I have had SLE/lupus nephritis for 41 years, since the age of 13 (okay that means I am 54 for you math geniuses)! After an initial few years of seroius illness taking steroids and Imuran I was able to remain in remission for many years. I spent my whole life trying not to be defined by this illness. Studied Chinese, lived in China, traveled, got 2 MA degrees, etc. But 12 years ago I had to retire on disability (that is what we call medically retire here in the US) Since the initial lupus diagnosis, I have also been diagnosed with fibromyalgia, Reynauds, also misdiagnosed with Parkinson's, (lupus or a stroke caused some inflammation in brain, causing Parkinson like symptoms and other neurological problems, which are thankfully almost all gone. But that is why I had to stop working.) So many things to deal with. I have always hoped to keep one major organ free of lupus but now with liver disease I don't have any left unscathed . Thank you for letting me share.