Primary biliary cholangitis

[HCantThinkOfA]

Hi I've had a lot of pain upper right for years. Especially since having my children. I've been diagnosed with spinster of oddi dysfunction but told I most problems have primary biliary cholangitis and undergoing tests. I've been on the urso acid with no change and wondered if anyone could provide me with any info or treatment's?

[GrittyReads]

I would talk to the advisors at the 'British Liver Trust' who host this site - link at top of page.

Also, there is a Support Group called 'The PBC Foundation' who specialise in helping women with PBC. They also have a website here on 'Health Unlocked'. You can search for them on here, and if you click on their PBC logo you will get a link to their website, where you will find loads of info and contact details for phone or email to talk to their trained advisors - they are lovely and knowledgeable. It might help if you ask your GP for a copy of all notes and letters about your symptoms, investigations, diagnosis, treatment and test results, then we and/or BLT / PBC.F can see if the correct procedure has been followed.

PBC is fairly rare and lots of GPs know very little about it, and some don't always toe the line.

Urso is the main treatment for PBC, but - I think - it would not usually be prescribed unless they were certain you had PBC. If it is not working, there is a new drug that helps a lot if taken with Urso, and there are at least 2 new drugs in the pipeline ( I thought one was available now, but cannot find the link I read) plus new research is ongoing and very positive. Urso takes a while to work, and you need to check they have given you the right dose - it's based on your weight - and that you are taking it at the best times. It also helps if your diet is helping your liver, as well as getting exercise and

I'm afraid I don't know much about sphincter of Oddi dysfunction, but I'm sure others on here or the advisors at BLT and/or PBC F can help.

Take care, and try to de-stress and treat yourself, and have fun. Easier said than done, I know, but stress is the worst thing for all autoimmune conditions.

Hope this helps.

[Jo_Br]

Urso is not just for PBC it just happens to work in some PBCers. It's used to treat all manner of bile issues, PSC, to improve bile flow. There are a few threads in PBC for sphincter of oddi dysfunction. It seems to be linked to PBC.

Urso can take quite a while to work, my hepatologist said not just the 13 weeks mentioned but can be a year!

I hope you get some answers and write down questions for the hepatologist when you next see them.

Here is the search to save you some time. healthunlocked.com/search/s...