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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

AIH and PBC

A myPBCteam Member asked a question 💭
Maine, NY

Do any of you have PBC and AIH called overlap syndrome? MY dr is now testing me for AIH. Just curious. I just had more bloodwork . My numbers have gone down again, but not by alot. I am now on Urso and pray I do not have to start taking a steroid. Just looking for advise and maybe some answers. Thanks

January 8
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Answer Summary

Members shared their experiences managing overlap syndrome, a combination of autoimmune hepatitis and primary biliary cholangitis, with... Read more

Members shared their experiences managing overlap syndrome, a combination of autoimmune hepatitis and primary biliary cholangitis, with several describing medication regimens that include Urso for PBC and immunosuppressants like Cellcept or Imuran for AIH rather than steroids. Several members offered reassurance that immunosuppressants are not steroids and have successfully managed their conditions for years, with some able to discontinue certain medications once their bloodwork stabilized on Urso alone. A recurring theme was the importance of regular monitoring, open communication with doctors about medication concerns, and finding the right combination of treatments to keep liver enzyme levels in check.

A myPBCteam Member

I was diagnosed with both in 2020. I take cellcept for the AIH and Urso for the PBC. It’s a tricky combination but with the right doctor and medication it should be manageable.

January 8
A myPBCteam Member

Yes I am on ursofalk now for PBC and I am off the Immunosuppressants for aih a few years now
You could try the Immunosuppressants for aih instead of steroids if you don't want to take them.

January 10
A myPBCteam Member

Hi! Not sure what AIH is- I wasn't ever told I have it. I was diagnosed with alcoholic cirrhosis BEFORE the PBC. I have stage 2/3 Cirrhosis. PBC is on the back burner for now. As that progresses so will my cirrhosis. Very similar symptoms so I never know which one's "acting up" at the moment. Total blood work once a month & ultrasounds every 3-6. On Urso and also diuretics...keeps me passing all the excess liquids that could build up. Also Potassium, magnesium, folic acid too. You can have both liver issues as I do. Cirrhosis late stage 2 -3 is very concerning. PBC can progress at that same time. Stage 4 is obviously the worst/final stage. But I understand it to be irreversible once it's gotten to 2 or higher. I'll look up AIH. Good luck. Keep researching/googling - Mayo Clinic's a good site to check out. This site's GREAT too. I've bought some books on Liver disease and cirrhosis. Very helpful. Take care! Hope to "chat" again.

January 10
A myPBCteam Member

Thank you so much. So you are not on urso for pbc? Still waiting to hear from my dr on bloodwork

January 9
A myPBCteam Member

So I guess How long have you had both and what are you being treated with for meds. Not sure if I have both yet, waiting to hear from my GI. thanks for reaching back out to me.

January 8

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