Is anyone at the cirrhosis stage of PBC and what have doctors given as life expectancy?

I know everyone is different but I've heard from one extreme to the other such as a person still living after 10 years from initial diagnosis of cirrhosis from PBC.

[judyt]

I am 10 years on from first identification of deranged LFT's and one year on from discovery of some cirrhosis and portal hypertension. Have been on Urso 6 months now and have had two 6 monthly scans. The first scan was 6 months ago and the second this week. The latest report says some cirrhosis and normal portal vein (that means better than before I presume). My Doc is a Liver Specialist who is on the transplant team at our city hospital so I have to trust her opinion!! If she doesn't know, who does? She has not made any comment about life expectancy and I know enough to not even ask. She says that the main risk at this time is Liver Cancer which would be primary since I have no other cancers anywhere, and that it is very treatable. I presume she means with Chemo and that is not something to look forward to but what would be the alternative??

Of course I don't know how old you are, lots of the members here are relatively young and I am almost 70. I suspect I have had PBC for a very long time already even though it was not found. I have Scleroderma and Sjogren's and they have been there for many years. Possibly since I was about 11 and definitely since 22 or 23. I have an acquaintance who has had a similar liver disease, Sclerosing Cholangiitis, for many years too and she seems much healthier than me. She is younger than me but not much.

The only thing to do in my view is to carry on doing what I can do, listening to the people who know and taking as much care as I can of myself. I have had no advice about diet in particular except that I don't drink caffeinated drinks of any sort, tea, coffee, Coke etc, and rarely have any chocolate. I have a fairly low fat diet except for a bit of cheese and a small serve of meat for dinner at night. I weigh 60kg which is just about a perfect BMI so I can't see what more I need to do.

What will be will be.

Take care and try not to worry.

[Hidden in reply to judyt]

Thank-you so much for your reply. You have the right attitude, a good doctor and living a healthy life, that's as good as it gets.

I've learned that if we have an autoimmune disease, we mostly likely have others, as you have. In bringing this up to my doctor, she said it wasn't necessary to see an immunologist as the blood tests didn't indicate any reason to explore this further.

I will push this further as, maybe, this will also explain the fatigue, as it all can't be blamed on pbc.

Thank-you, for your kind words.

[Aussie74 in reply to judyt]

Hi Judy, my mother had PBC. The 6 monthly scan is a precaution to monitor for liver cancer as it is a possibility with PBC.

[skippydownunder]

I have late stage 2 early stage 3 PBC with signs of fibrosis but no cirrhosis. My gastro says that is good. Not sure if fibrosis necessarily turns into cirrhosis. Maybe it never gets there if the medication Ursofalk works!

[Hidden]

I'm still learning and since this is a slow working disease, I'm sure taking Ursofalk will slow it down even more!

Thanks, for your reply and all the best!

[DoreenD]

I was diagnosed in 1988 stage one and now I am stage 4 with some cirrhosis BUT still doing ok. Some people can be in the cirrhosis stage a few years and as you know we each travel a different path with PBC, no one person is the same with PBC so we live our lives to the fullest as we can with the fatigue and all that comes along with PBC. Hugs Doreen in Australia.

[Hidden]

Hi Doreen,

I guess the unknown can sometimes be a hopeful thing. I will hold onto your words of living our lives to the fullest and keep hoping for the best as well as for you.

Nat in Montreal

[Aussie74]

Everyone’s diagnosis is at different stages, some respond better to urso than others. Google & chats can be great and informative, however they can be irrelevant to your situation. The best thing to do is ask your specialist what stage are you at. There is 4 stages & also how much of the liver has cirrhosis. My mother was always rushed in & out at her appointments and felt like an inconvenience. I started going with her and asking questions to get a better understanding of where she was at. Unfortunately there is a lot of specialists out there who still don’t fully know all the details, just the basics of the disease. Good luck