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Also I read in other people's comments that you are in stage 3 in pbc? How did you know what stage you are in?

August 28, 2024
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Answer Summary

Members shared their experiences with Ursodiol (Urso) for PBC, with most reporting little to no side effects and significant improvements in... Read more

Members shared their experiences with Ursodiol (Urso) for PBC, with most reporting little to no side effects and significant improvements in bloodwork, though one member noted months of nausea that eventually resolved. Several members discussed different methods for determining PBC stage, including liver biopsies, MELD scores, and specialized ultrasounds that measure liver elasticity, with stages ranging from borderline 2-3 to stage 4 cirrhosis. A recurring theme was the importance of taking Ursodiol consistently as the primary treatment to protect the liver from scarring, alongside lifestyle modifications like reducing sugar, fat, and salt, and maintaining muscle mass through protein and weight training.

A myPBCteam Member

Hi Rebecca, the ultrasound that I had said that I was borderline stage 2-3. My numbers are good , so I am still on the URSO. Not sure what the side effects of URSO are, but I still feel pretty good. Just the fatigue is getting to me. Otherwise I pretty much keep to my same routine that I have done for years.

September 27, 2025
A myPBCteam Member

The answer to your question is yes you have to take Ursodoil and be very strict on taking the it twice a day. Also cut back on sugar, fats and salt. Research what harms the liver and how to thin your bile to keep it from backing up into your liver. Nutritionist T C Hale talks about bile flow and using Beet Flow. The liver will stop producing glucose which keeps muscle on us. It is important to eat low fat protein and lift weights to maintain muscle mass and strength.

October 1, 2025
A myPBCteam Member

I have been waiting for UCLA to get a ultrasound tech that specializes in looking for the elasticity of the liver which should tell me that stage that I am in with PBC. I had a liver biopsy done when I was first diagnosed with this 23 years ago, and they didn't say what stage I was at. I possible was a stage 1 at that time. Hopefully, they will let me know soon since they finally got someone who does that. I recently spoke to my doctor and she will keep updating me on that.

September 1, 2024
A myPBCteam Member

I think lol, but I know the 2 go together some how, sorry, I'm just finding out, like a couple weeks ago, but I'm a research nut and also very confused about this whole thing! It is just unbelievable ๐Ÿ˜•

August 29, 2024
A myPBCteam Member

I have been on URSO since 2003 no problems. I had my liver biopsy in Hamilton Dr. David Wong, then he moved to Toronto and I went to him for years and when I felt I was okay I went to A Dr Housley in N.F. Instead of driving to T.O. NOW I DON,T GO ANYWHERE. I,M LIVING A GOOD LIFE AND DON,T WANT TO LOOK FOR TROUBLE.

October 1, 2025

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Maine, NY