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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.
September 20, 2025
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Answer Summary

Members shared their experiences with liver biopsies for PBC diagnosis, with several describing the procedure as less intimidating than... Read more

Members shared their experiences with liver biopsies for PBC diagnosis, with several describing the procedure as less intimidating than anticipated and emphasizing its value in confirming disease stage and securing insurance coverage for more expensive treatments if first-line Ursodiol therapy fails. Many community members described their personal journeys through different stages of PBC, from early stage 1 diagnoses responding well to medication and dietary changes like the Mediterranean diet, to more advanced cases requiring newer treatments like Ocaliva and Iqirvo, with several urging family members to get tested since early intervention can prevent progression. A recurring theme was the shared struggle with extreme fatigue, dry eyes, brain fog, and the emotional challenge of adapting to a chronic illness while maintaining a positive mindset, finding rest when needed, and refusing to let the disease define their active lives.

A myPBCteam Member

Yes, I had a liver biopsy last month. It is not bad whatsoever. Don’t let fear overtake you if you are considering not having it done. Thinking about it is much worse than the procedure. Even though my AMA was positive x2 and extremely high elevated liver enzymes my gastroenterologist recommended biopsy. First line treatment recommendation from him is Ursodiol but he brought up a good point - Having a positive PBC diagnosis from liver biopsy is helpful in getting the more expensive treatments covered by insurance if first line treatment fails. He said he has seen in the past were meds weren’t approved by just positive AMA and liver enzymes alone. Makes sense. A lot also has to do with particular insurance companies. Hope this is information is helpful for you 🙏🏻

September 20, 2025 (edited)
A myPBCteam Member

Hi Marcy, 😊
Thank you for sharing and that’s great that you caught it at an early stage and on the medication. Hoping you respond well to it and labs are good in November. The fatigue part is real and also so difficult for me as I have a very busy and active life as well. I’ve just in general not felt well for many years and not really knowing the reason but just always push myself through and I’m finding it harder to do that. I’ve also been looking at the Mediterranean diet, glad it’s helping you to feel better. I’ve had a dry eye problem my entire life, I was told many years ago that I probably have Sjrogrens disease which I’ve read people with PBC are more susceptible to it and now also have the dry mouth symptom. I use refresh drops in my eyes which is very helpful. Do you use anything? I wish you the very best and hope you have a wonderful day!

September 23, 2025
A myPBCteam Member

Reason biopsy is difficult for diagnosis is because you can have PBC in one area of liver and not in another sample of a biopsy as my liver Dr explained to me

December 8, 2025
A myPBCteam Member

Mine too! It’s pretty tough some days. I try and rest when I can.

December 8, 2025
A myPBCteam Member

extreme fatigue is my biggest problem as well

December 6, 2025

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