PBC Foundation

Is my reasoning faulty?

Elevated liver function tests led to a diagnosis of PBC in October 2016. (Positive AMA and liver biopsy, moderate to severe cirrhosis stage 4). Is my thinking correct that PBC caused the cirrhosis but that PBC is no longer really the issue? The end stage of both diseases is the same (ascites, varices, brain fog, itching, etc). Additionally, if cirrhosis is irreversible (stage 4 scarring), why would weight loss help. In my mind, what’s done is done. Other than fatigue and occasional itching, I am asymptotic.

11 Replies
oldestnewest

Hello ILik3Pizza.

As far as I was informed when I was diagnosed with PBC late 2010, it is for life as currently there is no cure.

PBC causes cirrhosis but it is due to the PBC that can cause it to continue to deteriorate in the cirrhotic state as bile ducts have or are continuing to disappear.

I expect treatment will be different if one develops cirrhosis (no idea what stage I am supposed to be at. Never had a biopsy as didn't need for diagnosis here in the UK but back in 2010 the consultant stated what he could see on my scan (normal looking liver and clear bile ducts) and he reckoned I'd only started with a few years prior.

I am not sure cirrhosis can be reversed but I do believe with PBC we can have times when it is dormant but only a doctor could give this answer.

It is said though that if someone has cirrhosis with good care we can still live many years with this. There's a leaflet on the British Liver Trust website about advanced liver disorder and it mentions how a different diet can be more beneficial.

5 likes
Reply

The article on the British Liver Trust was quite informative. Thanks!

Reply

ILik3Pizza, may I ask if you had normal lft up until 2016? Kind of scary to go from "normal" to cirrhosis stage 4 that fast?

Reply

My ALP numbers were high and the doctors were looking for a reason. Someone thought to do the AMA which was elevated and there began the journey. Yes, it was a surprise to be at level 4!

Reply

I had normal LFT for years and had Pbc all along...when they did elevate I was diagnosed at stage 3.

Reply

Hello, Im stage 4 PBC & F4 cirrhosis with all of the bells & whistles. Unfortunately there is no reversing either the PBC or cirrhosis. My treatment has remained the same, Urso with the Ocaliva. That's all there is to do is to continue treatment & pray that things stay the way they are. I cannot remember who it was but it was someone on here who informed me that he has lived 18 years being stage 4 PBC & having F4 cirrhosis. Just take care of yourself, eat as healthy as possible & try to be a little active. The active part is difficult for me but I also have been waiting on a actual diagnosis of fibromyalgia, which Im being treated for. Hope I have helped with the confusion.

Stay strong❣️

Shannon

3 likes
Reply

Back at you Shannon!

1 like
Reply

The end stage of cirrhosis whether booze or PBC is liver cancer and death so I agree PBC is meaningless once you have it. However, if we can't fix the dead part of our liver we may be able to halt or slow the process by changing our diet and increasing our exercise. Having a fatty liver or eating primarily unhealthy foods isn't good for any liver but for PBC we need to try to halt inflammation that leads to attack. I could be in la-la land but for 3 years I have had no change in scarring and my blood is good. I don't even have fatty liver. I'm no saint. I enjoy a couple of Coors Light - maybe 6 per week, bit more in summer. I treat myself to ice cream and cake once in a while. I believe, for me, the key was going organic. I drink only pasture fed milk, pesticide free chickens ie all organic. It's more expensive (7.50$ dozen eggs) but I save on other things to make it work. I highly recommend this for everyone. I am enrolled in a study. First session is March and every 6 months I will have ultra sound and have a blood test for 4 years. Purpose is to see if blood markers can detect liver cancer in time for treatment.

2 likes
Reply

I’m glad you’re doing well but not everyone’s end result is liver cancer, cirrhosis or death. Sorry. That was brutal.

1 like
Reply

Yes brutal.

1 like
Reply

SuziRae ...meant “ISNT liver cancer or death”

1 like
Reply

You may also like...