PBC prognosis

[lizzybeebee2003]

Hi, I was diagnosed with pbc around a year ago. I'm on urso and my blood levels are now normal. I know it isn't possible to say, but is there a chance that I may never develop symptoms? Do some people stay well and the disease doesn't progress? Or does everyone become symptomatic eventually?

Thanks

[Ikarix]

Hi there, I also would be interested to know as I I have only recently been diagnosed & after 6 weeks on Urso my bloods have dramatically halved . I certainly wish you well with this , still waiting to have a phone consultation with my consultant in February about the results., otherwise I could have commented . Wishing you luck .

[Hidden]

Hello lizzybeebee2003,

It is obviously not possible to predict for an individual, however it is possible to have symptom free Primary Biliary Cholangitis (PBC)with little or no progression if the medication is effective and as long as you take care of your general liver health (minimal alcohol, healthy diet and exercise)

The important thing would be to have regular monitoring and early intervention should you have any symptoms that develop.

britishlivertrust.org.uk/in...

Trust9

[tinypixie]

Hi Lizzy,

I had some liver damage but after using Urso I now have normal blood tests and the liver appears to be fine. I never developed the obvious symptoms of fatigue and itching. I do have osteoporosis and dry mouth but, in general, I feel fine. So, fingers crossed for you!

[Kakey]

I was diagnosed nearly 2 years ago, and don't have the itch or the fatigue. I hope that continues, for us all. I was diagnosed at the beginning of the first lockdown, and only really know what I read online, my medical care has been non existent.

[Onesmallstep1969]

Cirrhosis is a dynamic rather than a static process. It can get worse. It can get better. Do something every day to help it get better. Eat vegetables and fruits of many colors (easy on the sugary non-fibrous fruit). Stay on your meds. Keep all your doctors' appointments. Stay positive.

[islandanonymous]

I was diagnosed with PBC in 2013 and it had already progressed to compensated cirrhosis. Not long after I started taking Urso my bloodwork returned to normal and has stayed that way ever since. I don't have any symptoms (knock on wood) other than a little occasional fatigue but that could be due to age or boredom lol! I eat a healthy diet and get lots of exercise.

[Jennyhadenough in reply to islandanonymous]

I’m sorry about the cirrhosis. May I ask what stage you were in at diagnosis

[islandanonymous in reply to Jennyhadenough]

I wasn't told about any stage...my GE didn't even tell me I was compensated. I had to figure that out on my own. Also, last time I talked to him a couple of months ago I asked him if there were any stages to cirrhosis because I was wondering what stage I was at. He told me there aren't any stages, which of course is contrary to what I read on this site. I just end up shaking my head at this doctor and keep on keeping on doing what I'm doing, hoping for the best. In any case, according to info on this site, I am at stage 1. Taken from another post -

Stage 1 cirrhosis No Ascites / No Varices (compensated)

Stage 2 cirrhosis Varices / No Ascites (compensated)

Stage 3 cirrhosis Ascites / +/- Varices (decompensated)

Stage 4 cirrhosis Bleeding / +/- Ascites (decompensated)

[Jennyhadenough in reply to islandanonymous]

Do you know what stage you were at diagnosis

[islandanonymous in reply to Jennyhadenough]

Stage 1.