Is my reasoning faulty?: Elevated liver... - PBC Foundation

PBC Foundation

9,514 members8,440 posts

Is my reasoning faulty?

ILik3Pizza profile image
11 Replies

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.

Written by
ILik3Pizza profile image
ILik3Pizza
To view profiles and participate in discussions please or .
Read more about...
11 Replies

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.

ILik3Pizza profile image
ILik3Pizza in reply to

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

eleanoradair profile image
eleanoradair

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?

ILik3Pizza profile image
ILik3Pizza in reply toeleanoradair

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!

tonia17 profile image
tonia17 in reply toeleanoradair

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

Shulsey profile image
Shulsey

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

ILik3Pizza profile image
ILik3Pizza in reply toShulsey

Back at you Shannon!

SuziRae profile image
SuziRae

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.

gwillistexas profile image
gwillistexas in reply toSuziRae

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

SuziRae profile image
SuziRae in reply togwillistexas

Yes brutal.

gwillistexas profile image
gwillistexas in reply toSuziRae

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

Not what you're looking for?

You may also like...

Scared & Confused

I am new to PBC, I have just recently been diagnosed so I do not know all the ins and outs yet. I...
Cstar1079 profile image

Ursofalk and itching

Hi! I dont have pbc but i am taking Ursofalk 3 capsules a day beacuse my liver problem and i hope...
Ana1806 profile image

? Correlation between cirrhosis and hypoglycaemia.

Hello everyone. I am wondering if anyone with widespread cirrhosis such as I have, experiences...
Karaliz profile image

Confusion , is it PBC or not?

I was told a couple of weeks ago that I had PBC based on blood work. The dr. wanted a liver biopsy...
tammib profile image

PBC Name Change notice released via PBCers.org (* Partially repetitive to what's been posted here and with a few diifferent details)

PBCers Please Read - PBC Name Change Sun Apr 27, 2014 2:41 am (PDT) . Posted by: pbcers Hi...
JennerLayne profile image

Moderation team

See all
PBCCheryll profile image
PBCCheryllAdministrator
janethomas profile image
janethomasModerator
Cupcake1971_ profile image
Cupcake1971_Moderator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.