I was diagnosed with PBC in 2011 by blood work. Initially they removed my gallbladder thinking my liver panels were elevated due to it. Since they were still elevated after removal, they finally diagnosed the PBC. It's been a roller coaster ride ever since!
I occasionally have a twisting feeling just under my rib cage that is so painful at times that I will double over. This is not the same as the mild liver pain that I get at other times. It literally feels like something inside of me is "twisting" much like a rag when you are wringing water out of it!
Does anyone have this occur? I have been a non-responder to the ursodiol as well. Although my levels have come down tremendously, they are never quite normal. Got my latest bloodwork back last week and my alkaline phosphate was 292 about double what it should be, ALT was normal, AST was 58 (normal approx. 37), and my white blood count has dropped from 2.68 in February to 1.91 this time. Now, I've got to follow up with my oncologist. That is so scary to me. A couple of years back, I had to have a bone marrow biopsy due to my platelets dropping to 30,000. Thank goodness everything was fine with that and my platelets count came back up after a few months. Have any of you had similar instances occur? I know that we normally have a lower WBC with PBC anyway, but will be move around that much?
Just trying not to worry and give it to God to handle!!