Cirrhotic pbc: Hi all, My mother was... - PBC Foundation

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Cirrhotic pbc

Shon1234 profile image
8 Replies

Hi all,

My mother was diagnosed 30 years ago with Autoimmune Hepatits. She was 22 years on immunosuppressive treatment which she decided to discontinue after a talk with her doctor. Two years ago her liver enzymes were abnormal especially ALP and GGT (272, 332) weak ASMA positive and mildly abnormal bilirubin and albumin ( platelets were always low during her first diagnosis with AIH)

CT was preformed and discovered Liver Cirrhosis. She started to see a specialist, and after months of trying to diagnose her current condition, she underwent liver biopsy.

The biopsy revealed cirrhosis, inactive AIH and AMA negative PBC.

She’s now on urosodeoxycholic acid.

My question is: does Urso contribute to more advanced PBC? Can it be beneficial? Can it stop the progression or even try to reverse the damage?

Many thanks,

Shon

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Shon1234
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8 Replies
Annac profile image
Annac

Hi. I have been on Urso for. 16 years. For PBC (liver disease). I generally feel very well - the condition is monitored and keeping it under control. My first consultant years ago told me it doesn’t go away but he knew people who live normal lives with it. Keep taking the Urso I believe it helps. Hope your Mum is ok.

Shon1234 profile image
Shon1234 in reply to Annac

Thank you!

Kakey profile image
Kakey

I think Urso will still be beneficial. It should bring those numbers down anyway. It doesn't reverse damage, but slows progression.

Shon1234 profile image
Shon1234 in reply to Kakey

Thank you!

butterflyEi profile image
butterflyEi

Hi Shon1234 Good to read that your mother has been diagnosed and treatment started. I have heard many times on the PBC Foundationh's Thursday Q&A sessions that URSO is one of the most benign and beneficial medications. Once the urso gets into the system your mother will, hopefully, start to see a reduction in the numbers of the blood tests. For the answer to your last 2 questions you probably need to ask a specialist or that it will be a case of time will tell you.

If you are a member of the PBC Foundation you could email your question to them for presentation at the next Q&A session. The next Q&A is 9 June details can be found on the web site. You can listen in on Facebook Live or catch up when you are free to listen or you can join the session through ClickMeeting. Their web site is full of accurate up to date information and the Bear Facts magazine has articles written by specialists in PBC.

Diagnosed in 2006 URSO responder not doing too badly.

Shon1234 profile image
Shon1234 in reply to butterflyEi

Thank you! I will try to reach them

Tcmb50 profile image
Tcmb50

Hi, I don't have a great deal of knowledge about the treatment of PBC in the later stages but I do know a lady who was diagnosed at Cirrhosis stage, responded positively to Urso and is still doing well after 10 years. I wish your Mum well.

Shon1234 profile image
Shon1234 in reply to Tcmb50

Thank you!!

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