PBC/AIH1 Positive: Just as I was wrapping my... - PBC Foundation

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PBC/AIH1 Positive

lovesoccer profile image
7 Replies

Just as I was wrapping my head around my April PBC diagnosis and taking Urso (which does seem to me improving my liver enzyme levels) a liver biopsy also confirmed that I am also positive for autoimmune hepatitis type 1 (AIH1). I know PBC and other autoimmune conditions tend to run in packs. Does anyone else have this PBC/AIH1 combination? How has it impacted your treatment regimen and lifestyle?

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lovesoccer
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7 Replies
tnchikadee profile image
tnchikadee

Hi! My doctor thinks I have both but not confirmed. For sure I have PBC n the Urso seems to be helping lower liver numbers. Diagnosed 4 years now.

lovesoccer profile image
lovesoccer in reply totnchikadee

Thanks for replying tnchikadee. I’ll be able to share more about any other medications my hep might prescribe after my appointment with him later this month.

Rimeru profile image
Rimeru

Just had an appointment with my mother who has PBC for maybe 4 or 5 years now? We're waiting to get a call to schedule for a liver biopsy to rule out Auto-immune Hepatitis. I am curious, what made them do a biopsy? Was there anything specific in your blood work that prompted the test?

lovesoccer profile image
lovesoccer in reply toRimeru

Hi Rimeru. My bloodwork was positive for ANA, and from some further reading I think it was because I showed both homogeneous (PBC-suggestive) and cytoplasmic (AIH or other suggestive) patterns. My hepatologist said I was one of just a few patients he recommends for a biopsy following bloodwork to get a more definitive picture. In my case, he said it also serves as my baseline since it’s a new diagnosis from the PBC that he had diagnosed prior. The hard part right now is having to wait to see him to review the biopsy report more fully. I will know more when I get to see him later this month.

Hortonhearsanwho profile image
Hortonhearsanwho

hI! I got diagnosed with pbc on the 2nd September 2022 and had a liver biopsy on the 3rd of October as my consultant thinks I have aih too,I'm waiting for the results. I don't know much about either.

lovesoccer profile image
lovesoccer in reply toHortonhearsanwho

Hi Horton. I wish you good results from your biopsy but if it turns out you have AIH too, we can share information support each other.

Hi, Had an independent Fibroscan with the results of mild fatty liver S1 and advanced hepatic fibrosis F3. Saw a Hepatologist yesterday for the first time. Bloods and CT ordered. Thinks its autoimmune liver disease. Saw this thread and wondered how you all are now/ what's happened since?

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