Stage 2-3

[Mysa1981]

Any one has pbc stage 3 or 2-3 please help me with your experience and how long do you have this stage?

[Hidden]

Hello Mysa1981.

Well I find this PBC seems to be extremely variable between individuals. Some can apparently have it for the rest of their life and it hardly alters, some it plods along and some it can be a bit faster.

It's said that these so-called stages of PBC (I was just informed early 2011 that I had 'probably had PBC a few years' by the consultant. I wasn't diagnosed via biopsy nor have I had one), there isn't really any time set.

Even cirrhosis is said to be something that we can live the rest of our life with as that is variable too.

Had I never have started itching early 2010 I'd never have gone to see my GP. The only other sympton I had that I knew when I was informed by the doctor was fatigue (I just thought I was a bit rundown and tired due to my overly long working life at the time). Of course it was then found my LFTs were not right.

[Mysa1981 in reply to Hidden]

Hi Peridot

Thank you for your response

❤

[PBCRobert Partner]

Hi, Mysa.

PBC staging is a bit of a misnomer, I am afraid.

Staging within PBC refers to cell change within the liver (fibrosis or cirrhosis). So, "stage 3 PBC" doesn't technically insist. However, many US doctors (and patients) seem to be hung up on stage and what it means.

Staging has very little prognostic value. The key to disease progression is liver biochemistry. To have a full picture of PBC (and its progression) then one would need to look at symptom severity, liver biochemistry and changes in histological staging. The actual numbers are not as important as the trend.

Also, the liver can repair itself. So some patients can improve their stage.

I hope you have joined the Foundation (for free), and not just here, so that you can contact us directly and ask any specific questions you may have.

Yours,

Robert.

[kandiepat in reply to PBCRobert]

Yes I asked my liver specialist what stage am I? he said," well if I had 10 people all the same as you and I had to pick the 2 worst, you wouldnt be one of them!! " I guess that sums it up, they just dont know - I havent had a liver biopsy, but Ive been on Urso for two years since diagnosis. Im 74 and doing OK. I watch my diet,gluten free and now Im trying to kick the sugar. Kandiepat

[Mysa1981 in reply to PBCRobert]

Thank you👍

[tonia17 in reply to PBCRobert]

Hi Robert! I would love to hear more about how the liver heals itself. My stage Is 3 and my grade is 3.5 I know that is NOT GOID but I'm not getting hung up in that. I just don't want to progress to the stage/grade 4 diagnoses...

Also, can you discuss the biochemistry your speaking of? I'm in the US and would like to research that.

Thanks!

Tonia

[Michiganpbc]

Hi I am stage 2 I am seeing a liver doctor here at U of M. My stage was found by liver biopsy. How are you feeling? Any belly pain!

[Mysa1981 in reply to Michiganpbc]

Yes have belly pain and enlarge liver

[Michiganpbc in reply to Mysa1981]

Sorry you have this also! Do you do anything for the pain?

[Mysa1981 in reply to Michiganpbc]

No

[KevinHall10_ in reply to Mysa1981]

Did u say u are in stage 2?

[KevinHall10_ in reply to KevinHall10_]

Ok, i seen u said 2-3. How do we know when it is at 3?

[Michiganpbc]

Try using a heating pad it does help some for me....

[Lekkerbek]

I had a liver biopsy and then the soecislist said I was in stage 2. I then went to see a private specialist and she explained that they put my blood test results into the system and that will show if I need a transplant or not. She then said that the system can only say for the next 7 years, so she can definitely say that I will be fine (PBC wise) for the next 7 years. With english not being my first language, I hope I explained it properly?