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Pbc staging

Kieraferret profile image
8 Replies

How do you find out what stage you are, is it done by tests?

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Kieraferret profile image
Kieraferret
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8 Replies

Hello Kieraferret.

Apparently it is said when you have a biopsy but there is a bit of conflict on that one as the biopsy site where the sliver of liver is taken might show up healthy or notso but it isn't a true picture of the whole liver. PBC is said to be definite for diagnosis via liver biopsy due to cell changes throughout the liver.

I am not sure if the scan that can show the liver (forgotten what it is called now, not the standard ultrasound), that can stage as never had one.

I am confident that a standard ultrasound can show the extent of any liver damage as I saw a tv programme not long before I was diagnosed with PBC in 2010. Two men were having scans of their livers live on air, one was said to have a fatty liver as we were talked through the scan with the man and the other man was said to have cirrhosis but he was an alcoholic.

I don't actually care regarding stages of PBC personally. I've not had a biopsy as I was diagnosed via symptons, bloods and also it being found I had the specific antibodies, the AMAs relevant for this.

I'd rather just crack on with living life as best I can (I am not far off 52) and go with how I feel as opposed to stagings of PBC. I'll deal with things as and when as in my mind those things might never happen that can in PBC.

NotorDJP profile image
NotorDJP

The gold standard in the US, where I am from, is Biopsy. Its how I was staged. There is something called a fibroscan that is also pretty accurate. Its becoming more popular here, but used widely in the UK and Europe.

teddybear7 profile image
teddybear7

Peridot is quite right it's by biopsy, I've been told I'm probably stage 2 cause I'm symptomatic. But nothing confirmed till biopsy. X

Gioielli5 profile image
Gioielli5

Hi Kieraferret, this is usually done by a biopsy but even so it is very hot and miss as to whether or not the needle hits a damaged or healthy part of the liver. Would not worry too much about stages just keep an eye on your blood levels and if constant at around double the upper limit then you are doing ok. Take care xxx

spoul profile image
spoul

I like peridot haven't had a biopsy as my consultant doesn't think it's satisfactory way of staging and carries risks of bleeding. I have tho had a couple of fibroscans that show I have some cirrhosis but this has taken 17 years to develop. So o wouldn't get too hung up on staging as we all progress differently.

Take care 😊

DianaRo profile image
DianaRo

I was diagnosed as stage 2 through a liver biopsy. The doctor who did the biopsy said he took 7 plugs from the liver, each from a different area.

bobbycat profile image
bobbycat

Hi

I had a fibroscan and something called a pill cam to show varises...those with my blood tests showed I was on Stage 1 cirrhosis......it has taken over 17 years to come to this..so dont worry too much. The only thing I Will say to anyone else reading this is that when you have cirrhosis you have to take it seriously.

bei15354 profile image
bei15354

I'm in the US. My 1st liver biopsy was conducted just a couple weeks ago. My specialist insisted that it was the only way to obtain a definitive diagnosis as well as stage the liver. I had my post-biopsy visit with him today. My results: definite PBC and, most alarmingly, stage 2 to 3. I am not experiencing any symptoms - no itching, no jaundice, no fatigue (beyond what one would expect working =50/hr weeks bookended by long commutes in hideous traffic). 

He will start me on Urso. I go back for a progress check in 3 months. Have a a fibroscan in 5 - 7 years. Wait and watch. 

I want to quit work and live like I've always wanted to. Problem is, I am my family's only wage earner, so no joy for me. I feel like I have been given a death sentence. I'm so upset - sad - terrified. 

Don't delay getting a definitive diagnosis, in what ever way your doctor requires. The needle liver biopsy is not a bad procedure at all, though I was so frightened of it I almost ran out of the hospital. Would have if my husband wasn't there. They put me into a twilight state and numb the puncture area. I remember some sensations but no pain.

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