Hi all - I haven't been on in about 6 months but wanted to give a quick update on my PBC, hopefully it will give others hope.
Quick update: I'm 37, female, diagnosed with PBC a year ago (but had it longer, undiagnosed). My first pregnancy brought the conditions to light and allowed me to get diagnosed early. I'm being treated by the Mayo Clinic in Jacksonville. I've been on Urso for about a 1 1/2 yrs. It took that long to finally begin seeing positive results. My last visit to Mayo revealed my levels have been cut in half from their highest point. Still not normal, but I think this is my new normal. Levels are in the hundreds, not thousands, thank God!
We have ruled out PBC with AIH after a run of prednisone (hate that stuff!), so now it's just PBC.
Mayo doc won't give me prognosis or idea of what the future may hold, which is frustrating. I guess they don't know all, but I'm hoping I can get a nice long run out of this liver, or that within 10 years there are more advances to treatment.
We'd like to have a second child, but both my husband and I have some big concerns about that. More docs to talk to before we make our final decision.
I've adjusted my diet, but have gotten really slack on it since christmas, and I'm feeling the results of that thru itchiness. Between the Urso, diet and getting plenty of sun (vitamin D) I think it's all working together.
Would love to hear from other PBC patients, or caregivers!