What is pbc?: - PBC Foundation

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What is pbc?

Minnymouse profile image
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Minnymouse profile image
Minnymouse
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Dolly67 profile image
Dolly67

Pbc is an auto immune based disease that affects the bile ducts in your liver.

High abnormal liver enzymes and positive AMA factor diagnoses this. A liver biopsy is usually the confirming factor.

Axl888 profile image
Axl888

You can get information on PBC from The PBC Foundation in Edinburgh

LindaSusan profile image
LindaSusan

I understood that the bile duct leaks on to your liver causing cirrhosis (scaring). Not sure how diagnosis is confirmed as mine was discovered after a diligent GP discovered raised liver profile containing an enzyme that it only present in cases of PBC.

I have yearly blood tests to check the liver profile levels and if they don't rise (and they haven't in 12 years) no medication is needed. Every four years I have an ultrasound on my liver and an endoscopy to look for varices.

Hello Minnymouse.

Well PBC to me is known as the 'Pretty Bloody Crap' thing!! That's what I call it anyway! I was informed back in 2010 after suffering itching and fatigue and then having abnormal and elevating liver function tests (LFTs) along with a high titre of AMAs (certain antibodies) that I had this PBC.

The P apparently is for Primary which means it's unknown cause, the B is Biliary meaning the system with which the liver functions along with the bile ducts and gallbladder and C for Cirrhosis of which I was told might never occur. (There is apparently a debate going on about changing the C word to something else with a C.)

PBC can be a threatening condition but it can also be one that can span your lifetime without becoming problematic too. Currently, once you have PBC you will always have PBC and though you will die having PBC it might not be due to it.

In PBC the antibodies are attacking the bile ducts within the liver, this then causes the bile to leak into the liver which causing irritation and then inflammation. Bile is apparently the most toxic susbtance that our bodies produce. With a compromised biliary system this then means that over time the liver can suffer.

Urso is the only licensed medication at present that is available to take. It is said to improve bile flow and in turn causes less strain on the liver. The liver can go on repairing itself and we can function on just a tiny part of it but if PBC becomes so problematic the whole liver is damaged then it finds itself no longer able to do the job it does.

Betonarme profile image
Betonarme in reply to

Precise & Simple :)

cavi profile image
cavi in reply to Betonarme

I agree your replies Peridot are so easy to understand I always like to read what you have to say and you make things sink in so much easier with all this brain fog Thanks x

Thank you both Betonarme and cavi for the replies.

I do believe that with this PBC it can be easy for some to have great fear about it. Yes I was worried greatly prior and just after diagnosis of PBC in Dec 2010. But with acceptance you have this PBC comes passing time and the more time passes and you are still here and doing as well as you can be then I do think you see it that bit differently.

I have to admit I switch off from reading about how it could become further down the line for myself, even go as far as to say I let certain things my GP said last year on registering with her 'go over my head' as I thought she was being a tad dramatic at the time. (But she herself was reading up on PBC as she said so understandable in a way.)

I try to think positive so that I can enjoy the life I have now. I'd rather make some decent memories now and not let PBC dominate my life constantly.

I have recently started forgetting the odd thing or doing something wrong but I don't think about 'brain fogs', I turned 50 recently so reckon to do with going through the menopause and also I say I'm having 'a senior moment'! (Here in England we are going to the Polling Stations soon, last week I went to vote only to walk into a dance class at the local church hall which is used as a Polling Station!)

in reply to

I totally agree. My first 6 months after diagnosis were such a pity party and fear of the unknown and what might come. After realizing that I wasn't feeling any worse than I did before AND a close friend's diagnosis with leukemia, I gained a lot of perspective on what is currently just an inconvenience for me. I am very lucky and my heart goes out to those PBCers who are experiencing the serious symptoms.

in reply to

Hello jmilmog.

Not to start off on another topic but the one thing that really has annoyed me over the last few yrs that I have had diagnosed PBC is the fact that the media seem to cover alcohol and the liver, problems that can be encountered.

The difference between one with PBC and a person who has damaged their liver and got to a cirrhosis state due to alcoholism is the one with PBC cannot halt that progression but the one with a cirrhotic liver caused duly through alcohol can halt it even if they continue to live a compromised life through it.

I think this is one of the things that has irritated me the most, knowing that I haven't caused PBC purposely and do not know how it started up in the first place.

There are others less fortunate out there I know myself. I am able-bodied currently and hope to remain so, I live a pretty full life and due to PBC know that time is for living and not wasting.

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