stageing

[sophie666]

hi everyone hope you are all ok i wondered if anyone knows what stage 4 is in england and is there only 4 stages to pbc or 6 ? any help would be greatly apreciated xx

[Hidden]

Hello sophie666.

I am in the UK (England) and I actually don't know at what stage I am with the PBC. To be honest, I don't really care. I go off how I am feeling.

I have never had a liver biopsy due to the fact I was diagnosed with the factors that enabled one unnecessary.

If I was requested to have one now I'd not go ahead.

I once filled out a survey on the British Liver Trust site (a few years ago now it was) and when I clicked on that I had PBC and there was a mention of did I know at what stage, there were no numbers but just one word for 4 different 'stages'. The first was 'inflammation' as I recall.

Cirrhosis was the final one. But given that we can also reach a cirrhotic stage and continue to live adequately OK for years I don't really care to think about stages in PBC.

I think with the stages of PBC we can all have varying symptons anyway so to me it is far best to crack on with life and just deal with things as and when. I'd never have known I had PBC but for starting to itch as at the time that is the only sympton I really had as well as fatigue I never thought anything of. The bloods obviously showed abnormalities but I'd never have known unless it was found by accident had I not have itched.

[sophie666 in reply to Hidden]

hi peridot i have spoke with you before i too am from the uk the reason i asked this question is i have had a biopsy and the specislist had it done after i was diagnosed with pbc it wasnt that bad i got hold of a copy of the results and was stage 4 acording to the hospital that was nearly 2 yrs ago i think the us have 6 stages but not entirly sure xxx

[Twill in reply to Hidden]

Hi Peridot

I like your attitude to living with PBC. I try to be positive and get on with life but have days when I feel so tired and have a lot of muscular pain. I have started taking 2 paracetamol in the morning and find this helps but scared to take anymore during the day because I don't want to subject my liver to any more toxins.

I live in the south of England and would love to meet up with anyone living nearby who has the same illness. I love the forum because when i have a down day it makes me feel better reading all the posts.

Take care

Tricia (Twill) X

[Hidden in reply to Twill]

Hello Twill, unfortunately I live in Lancashire or I would have been more than happy to have made a more personal contact with you.

I did read unless we are in advanced stages of PBC majority of medications are 'well tolerated'. I do agree with you regarding using the paracetamol that you are only using it once a day.

[Gioielli5]

Hi Sophie, there are 4 stages in th UK. If you were at this stage 2 years ago then I believe your consultant should be keeping a close eye on you and assessing your need for possible transplant. I assume you are having regular check ups. Good luck x

[Hidden]

Here is a link to the PBCers.org page giving a break down of PBC Stages:

pbcers.org/about-pbc/stages...

[sophie666]

thanks for your reply dianne it was most helpful hope you are well xx