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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.

Sorry I haven't been told anything since being diagnosed other than if there was a mild version of this disease I have it. Which I don't even know if there is. I've had no support I see a gastroenterologist and even that was over 2 years ago.

April 6, 2025
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Answer Summary

Members rallied around someone who felt abandoned by their medical team after a PBC diagnosis four years ago, with the overwhelming consensus... Read more

Members rallied around someone who felt abandoned by their medical team after a PBC diagnosis four years ago, with the overwhelming consensus being that immediate medication (typically Ursodiol) and regular monitoring are standard care that this person unfortunately did not receive. Several members shared their own care routines, which typically include seeing a hepatologist or gastroenterologist every 2-6 months with blood work at each visit, plus annual imaging like Fibroscans, ultrasounds, or MRIs to track disease progression. A recurring theme was the critical importance of self-advocacy, finding specialists with specific PBC experience, seeking care at larger hospital systems if needed, and not accepting being told to just Google your condition as acceptable medical guidance.

A myPBCteam Member

The beginning stage is a fatty liver. Stage 1 . It is important to study and research the stage you are in. Urso given in the early stage should be perused by you. It helps with bile flow and inflammation of the liver. Eat organic, no alcohol , soda pop, or processed foods. Bad fats like crisco, etc is really bad for the liver. Lower your salt intake, and sugar. Total lifestyle change. T C Hale is a nutritionist who discusses protecting your liver on u tube. Best wishes and long life.

May 1, 2025
A myPBCteam Member

Thank you so much for everyone's messages and guidance. I have been researching like crazy to figure out what should have been done from the beginning. The fact that 3 seperate doctors and 2 so called specialists all missed that I am not on medication, I've had little to no tests done and I was told to google PBC leaves me feeling hopeless that I am going to get any real results. So I am starting from scratch and now finding out what needs to be done.

I can't thank this site enough for making me aware of what SHOULD have happened 4 years ago and that I am now hopefully going to get the medical care I deserve.
Thank you to everyone I can't tell you how grateful I am.

April 8, 2025
A myPBCteam Member

My specialist told me fatty liver is NOT beginning stage. A well known specialist at Cleveland Clinic.

May 4, 2025
A myPBCteam Member

I see a gastroenterologist who has experience with PBC. They started me on Ursodiol right away. We do blood work every couple of months as I was diagnosed last August. She said when my numbers are a little lower, we can go to a 6 month routine for testing. We do MRI and ultrasound yearly. Even if you go to a hepatologist, you need to be sure and ask if they have experience with PBC. Not all of them do....good luck and be well!

April 14, 2025
A myPBCteam Member

Go to a LARGE hospital system and make a scene!

April 13, 2025

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