My mother was diagnosed with PBC 2 years ago. She has been taking Urso for about a year now: 3 capsules before bed (she is about 90 kg). Her bilirubin is still around 35-40 but the doctor says that it would probably stay that way. AST/ALT/GGT have all come down.

How long is she supposed to take Urso for? Does she have to take it indefinitely for the rest of her life? She doesn't have any side effects, no itching. She has mild ascites.

I also want to mention that she might have alcoholic liver because she used to drink regularly over a long time. So, it might not be PBC. AMA test was inconclusive (weakly positive) with very low levels.

Would treatment for alcoholic liver be different? Urso has definitely improved her bloods. If it's indeed alcoholic cirrhosis, would she still have to take Urso indefinitely?

Many thanks


3 Replies

  • Not sure if alcoholic liver disease would cause itching. I have PBC and took Urso for 18years...it does improve blood results and I only stopped taking it after my transplant.That was the amount I took.. as I am a similar weight that's how they work dosage out. Hope your mum continues on Urso and her blood tests keep stable. Ascites seem to go with any type of liver disease, I didn't have proper ankles for years. Sorry I don't know enough about alcohol part but hope this helps

  • I take urso as I have aih and pbc,I have been told I will probably be on them for life but I take mine 1 three times a day as opposed to all at night,don't know if that's worth mentioning to your consultant,any information helps,good luck

  • There is a specific PBC site on 'Health Unlocked' - hosted by the PBC Foundation. You might want to post on there, if you have not done so already. Or better still (as PBC is such a variable condition for us all) why not phone the PBC Foundation direct (and the BLT) and have a talk to their advisors about your mum's condition.

    Good luck I hope all goes well.

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