PBC Foundation
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Treatment and advice


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


1 Reply

Hello temirzhan.

I feel a bit confused on reading your post.  Firstly ursodeoxycholic acid (urso for short) is used in the treatment of diagnosed PBC and is usually for life (unless another treatment comes along).  It was originally developed to treat cholesterol formed gallstones.  It is also used for itching in pregnancy and that is known I believe as cholestatis.  MY brother-in-law's wife was by coincidence diagnosed with another liver condition 3yrs ago now, hers is PSC and she started itching last year and when I saw her she said she was taking urso for it.

I was diagnosed with PBC in December 2010 and started taking urso.  Mine led to diagnosis as I started itching early 2010.  I didn't have a liver biopsy as some do as I had symptons, abnormal as in higher than normal range liver function test (LFTs) and also the GGT blood test (this is used in liver conditions).  I had the antibodies check and my AMAs were said to be of a 'high titre' so I was diagnosed this way.  Usually if there is any doubt as to a diagnosis of PBC a biopsy tends to be performed.

The difference between someone who has a damaged liver who drinks alcohol and one with PBC is that if a heavy drinker was to cease drinking and providing their liver wasn't cirrhotic it could start to repair itself.  In PBC it is not something that tends to happen after a certain time when we hit a certain point as unlike alcohol cessatoin we cannot stop progression of PBC as yet.

Only a doctor would know if your mother has developed cirrhosis. 

I do think from your posting you need to ask your mother to have it explained whether she does in fact have PBC but as you have stated she is on urso and she does not itch it seems likely.  Some with PBC do itch, others don't.  Some start to itch later in PBC and others never do.

I think with anyone who goes on to develop cirrhosis the doctor would deal with symptons as and when.


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