Mixed Primary Biliary Cholangitis and Autoimmune Hepatitis

Posted by lmpa65 @lmpa65, 21 hours ago

My story is long and complicated. Not sure where exactly to start. About 18 years ago I was diagnosed with Cogans Syndrome. Have been on many medications over the years Cytoxan,rituxan,embrel, many years at varying prednisone doses,methotrexate, cellcept just to name a few. I became seriously ill in Oct 2024, ended up with bowel rupture followed by 6 abdominal surgeries and a four month hospital stay. I had to relearn how to walk etc. I am getting stronger everyday but still not at my baseline. (I was working a 60 hour a week job as a medical provider) I had a change in my labs with a Alk phos 408, and elevated LFTs. My rheumatologist who is on the ball ordered several special tests that pointed to Autoimmune Hepatitis, I also had MRCP that showed biliary duct issues and severe fatty liver. She sent me to liver specialist and he ordered a liver biopsy. Hence where the new diagnosis of PBC and AI came from. Currently on 32mg of methylprednisolone and Ursodiol. Next step would be to add Azathioprine however I did take that in the past and it wiped out my white blood cells, they are doing a special blood test to see if they can try it again possibly at a lower dose in hopes of decreasing the steroid I’ve been blessed that steroid use has not caused diabetes but it has trashed my bones causing moderate to severe osteoporosis.
With all of that being said, I am just looking to connect to others with similar issues.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@lmpa65 Welcome to Mayo Clinic Connect! I’ve asked 3 members who also have AI if they would come back and tell you their experiences, @boomcan @lucerm1. @chopin002 . Others will join in, too!

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