Stage 2 PBC

[engasser]

Does stage 2 mean I have a shorter amount of time until I need a transplant? From what I read it seems more the bilirubin levels. But stage 2 seems like there is damage and will cause problems sooner.

[LindaRose]

From what I understand you could stay in stage 2 for ever, so don;t worry. Most people die WITH PBC not from it and they have found that taking Urso has a really beneficial effect on PBC. So don't get hung up on stages as they don't mean that much. As you say your LFTs esp BIllirubin seem to be key markers of how your liver is doing.

[Hidden]

I don't take any notice of apparent stages in PBC.

I've no idea at what 'stage' I am supposed to be in and don't want to know myself.

I know in the States it seems the norm after diagnose of PBC by AMA (some have queries regarding the AMA so they have a biopsy) to have a biopsy to 'stage' PBC. Here in England it doesn't seem the norm and quite frankly I wouldn't see the point in myself having one as I was diagnosed on abnormal LFTs, a couple of common symptons (itching one) and the positive AMAs.

I think nowadays it does seem that the repeat bloods show certain changes and also any further developing symptons .

I personally go with how I am feeling. Last yr I didn't have so good LFTs though still far far better than at diagnose yet I was feeling great. Then the following one when I thought I wasn't doing so well the LFTs were brilliant.

[elianan54 in reply to Hidden]

What are LFT's?

[elianan54 in reply to elianan54]

Oh, got it. Liver Function Tests. Silly me.

[Karaliz]

Hi there engasser.

I am from Melbourne, Australia, where the so called "gold standard" for definitively diagnosing PBC is liver biopsy. It is subsequently used to stage the disease if deemed necessary by the consultant.

For example, I was diagnosed nearly 10 years ago at age 38 when biopsy revealed stage 1-2. About 18 months ago when LFTs were significantly worse, my consultant ran a gamut of tests including ultrasound, fibroscan and MRI and culminating in a liver biopsy. This showed stage 3 fibrosis.

The consultant's rationale is to use information to plan for the future and to rule out any other possible liver diseases, which he thought may have caused significant deterioration in blood results.

So I guess to answer your question, every individual is different and it is very difficult to predict how long each stage will last . As LindaRose says one person's stage may last for a very long time without progressing. It is also true that bilirubin, albumin and clotting profile give specialists a very clear picture of how the liver is coping with the disease process.

I am in a minority group that has not really responded to Urso which might also explain disease progression in my case.

Hope this helps even a little.

Cheers from Down Under !

[Hidden in reply to Karaliz]

Hello, apparently the ability for the blood to clot due to clotting agents in the blood (which are normally done with the prombothin blood test) doesn't happen normally until later in PBC.

Out of interest have you tried taking milk thistle? I take one a day as well as the urso and on my own experimentation along with urso I have found my LFTs have greatly improved, moreso that just being on the urso alone. I started taking milk thistle for a month prior to a repeat LFT last May as my previous bloods had taken a slight climb for the 2nd time in 6mths. I got fantastic results from the May 2012 bloods. I ceased taking the milk thistle and Oct 2012 I saw slight climb in bloods but I restarted taking milk thistle prior to Christmas 2012 and when I had repeats done 2 months ago now, the results were pretty amazing so I have continued taking milk thistle daily.

[Karaliz in reply to Hidden]

Hi there,

No have not taken milk thistle as really ignored PBC for first 8 years in spite of LFTS never normalising. It was only 18 months ago when they deteriorated markedly that Consultant became more concerned. I am now on the Obeticholic Acid trial and therefore unable to take anything else as the aim is to see how bloods are when Urso is taken in conjunction with Obeticholic Acid.

Hope you're keeping well.

[Hidden in reply to Karaliz]

Read a bit about this trial, think it is also referred to as OCA.

You'll have to keep us all posted on how you are doing on this Trial. I know I'd be very interested in hearing.

Can you say at the moment if you think the OCA in conjunction with urso is starting to make a difference or you feel different?

[Karaliz in reply to Hidden]

Hi peridot.

Yes, apparently a couple of preliminary small trials involving Obeticholic Acid showed very promising results - I'm sure you read about those. This larger trial is double blinded so neither I nor the investigating doctors know which arm of the trial I am in. There are 2 active arms- 5mg and 10mg - and a placebo arm. My doctor and I rather suspect I am in the placebo arm as apart from having nothing remotely like any side effects my LFTS are slightly worse if anything and have been on drug since December. e.g ALP- 524 in Nov 2012 and 597 in March 2013.

Either that or it's not working !! Will find out at the end of the year which arm i am in.

Keep well.

[Hidden in reply to Karaliz]

I did read somewhere about some infusions but they weren't tablets. They were intravenously given. A lady with PBC who had gradually deteriorated over the years trialed it last yr think it was and she said her itching vanished and her LFTs got much better. Seem to think that was something like 'INR and a number'.

Cannot remember where I saw it but sure this lady had the trail down in Birmingham. I'll have a snoop when I have time later today and if I am successful in tracing it, I'll let you know. It may or may not be of any interest but I'll do my best to search it out.

Regards.

[Karaliz in reply to Hidden]

Yes I believe the preliminary trials were carried out in the U.K and possibly the states / Canada ??

I think there are about 200 in this trial, mainly from Europe/U.K.. Only a handful from Australia.

Cheers

[engasser]

Thanks so much for the information. I will pray for all of you. I'm sorry that you do not respond to the Urso. Maybe you will stay in the stage your at regardless. Thanks for taking the time to give me advice. Patty