Living with Pbc

[Zlle]

Hi everyone, my name is Zlle. I was diagnosed with pbc in 2016 and have been taking ursodiol since then. I am trying to live healthy but recently we moves to another state and life kind off tookover. I am tryijg to find a community with the same condition to learn how to manage symptoms and talk to people experiencing pbc. Hope to connect with you. Much aloha and blessings.

[PBCRobert Partner]

Hi Zlle.

If you have not already joined, I would encourage you to join the PBC Foundation. It is free and can provide you with everything you mentioned above.

In the meantime, there are some good threads on here with real patient experience (albeit with varying knowledge and specifics).

There is a lot of old misinformation out there which is why I recommend joining the Foundation.

Yours,

Robert.

[Zlle in reply to PBCRobert]

Thank you for the info Robert. I will definitely do that.

[KKate2018]

Welcome Zlle!

I do have one ? for the general group - what is a fibroscan? Is it the same as kind of an echoimage, but it emits pulses at your liver (to test density I guess)? Am I on the right track?

[KKate2018 in reply to KKate2018]

Sorry - just to add more, I had asked my Dr. what 'stage' my liver was at, he said he refuses to go by a number... So how do I judge how 'severe or not' it is currently?

[gwillistexas in reply to KKate2018]

We have another member here whose hepatologist wouldn’t give her a stage. Like yourself, she has no idea & her numbers are out the roof. But good thing is, she found a new Dr.

[Bobbiesitzman in reply to gwillistexas]

Hello, I am that member. I was dx on 1/28/18 after blacking out breaking 3 ribs ending up in ER. I was admitted with extremely high liver levels. I was given 1000 mg steroids infusions every 6 hours. My Dr told me he would treat me the same if I was a 1, 2, 3 or a 4, I was fine with this answer until I educated myself from being and this & other support groups. I know know that I am not getting the treatment that I need. I have an appointment with a new Hepatologist on August 3rd I highly recommend you find a new doctor.

[gwillistexas in reply to Bobbiesitzman]

😊

[shaza1966 in reply to gwillistexas]

Hi gwillistexas my liver doc doesn't go by stages either . He always goes by the bilirubin count more than the others as this tells him how well my liver is functioning . I get ultrasound scans every six months and if my spleen is every showing signs of enlargement which it has on 2 occasions i then get an esophogastroduoenoscopy. I have a lot of faith in my liver doctor . I don't really get caught up in knowing everything as it gets too complicated for me specially as i get a lot of brain fog lol ! . My doc knows not to get to technical with me and he is great at looking after me . tells me straight if it is going in the right direction . He was also thrilled at the bizafibrate treatment that took my bilirubin levels down he said that it was very encouraging .

[gwillistexas in reply to shaza1966]

G’morning! Oh I understand. My dr isn’t a stage dr either. I have labs every 3 & 6 months to watch levels. He too, keeps close eye on “direct” bilirubin & ALP. But he does order fibroscan yearly just to have an idea how well my med is working as far as fibrosis. The only level that was high for me was ALP & it dropped to his satisfaction & mine as well. Very important we have faith in our dr. 😊🦋

[shaza1966 in reply to gwillistexas]

Hi gwillistexas , i have ever faith in my gastroenterologist . Dr Andrew Bathgate from the royal hospital Edingburgh Scotland . Also my gastroenterologist at St Johns Hospital . And not forgetting my Gp doctor she is fab . She listens really well to me she said that i'm teaching her about pbc she had never had a patient with pbc before . Makes life a lot better , i am fortunate to have a great report with them . Take care best wishes Shaza .

[gwillistexas in reply to shaza1966]

Hi shaza...sounds like your in the best of care in all corners😊. That’s so good to hear. 👍🦋

[shaza1966 in reply to KKate2018]

Hi Kkate my liver doc is the same read what i wrote to gwillisytexas on this post . More than likely if your doc doesn't go by stages he will probably be looking at the functioning of the liver. He may use the terms like fatty liver or cirrhosis which mine has told me i have a fatty liver . I hope you are well as you can be with the pbc best wishes to you Shaza

[gwillistexas in reply to KKate2018]

Yes👍

[PBCRobert Partner]

Thank goodness we now have clinicians in the US that are going beyond “stage”.

“Staging” is a hot topic for me so I need you to know this before I have my little rant.

So...

First off, “Stage 2 PBC” doesn’t exist. Or stage 1. Or 3. Or 4. Or anything else.

When clinicians talk of staging, they are talking solely about the histological aspect of PBC. That is, the cell change in your liver.

They are not talking about your PBC. Just the cell change.

So why do patients want to know their stage? Because it tells them their life expectancy? Or how fast they are progressing? Or even where their PBC is? Well, actually it doesn’t.

Histological staging is of little value when looking at prognosis, or life expectancy. Histology, until we start getting to cirrhosis, tends not to guide PBC treatment either.

There are three aspects to PBC: symptoms, liver biochemistry and histology. All three need to be monitored. All three tell the clinician and the patient where the PBC is at.

Even then, trends are more important than absolute numbers.

I have met over 2000 patients with PBC. I have met patients who have been at stage 4 for 20 plus years. Often.

Even once you get to stage 4, you need to progress again to then go onto a new scale. Stage 4 isn’t the end of measurement.

So personally I am delighted US clinicians are finally getting past “staging”. I hope, for their own sake, patients in the US do, too. We have spent many hours helping people worried unnecessarily because they have “stage X PBC”.

Of course it is helpful to know if your histology is improving or progressing. Absolutely. But...

It is a small piece of the jigsaw. But your stage absolutely does not describe your PBC. Nor does it guide your PBC treatment. Nor does it really give you prognostic information.

I shall stop now. I hope that is helpful.

Yours, as ever,

Robert.

[Lawyers in reply to PBCRobert]

But isn't staging important to know if you have chirrosis. I have been grade I Stage II for 14 years. Just had liver biopsy. I know liver is functioning. Elevated ALP but normal bilirubin. For me it is some piece of mind.

[gwillistexas in reply to PBCRobert]

I believe when my dr said “early stage2” he was referring to measurement of my fibrosis. 🦋

[PBCRobert Partner]

Liver biochemistry can also tell if you have cirrhosis.

As I say, histology is one piece of the jigsaw and the trend is more important to know than the “stage”.

When it comes to histological progression, damage happens in pockets around the liver at different speeds. So it is conceivable that a patient could have stages 0,1,2,3, and 4 in the same liver.

So it doesn’t help to get stuck on a number (that may just be an average) but to take in all the information.

It is great news about your results. Delighted that they give you piece of mind. I imagine the stability and lack of progress is very reassuring.

[Lawyers in reply to PBCRobert]

What is the point of the biopsy? May I ask. Are you a hepatologist? Are you in the US. I find extreme variations between UK and US in treatment. How can a doctor tell you you don't have something with uncertainty? As a lawyer I can tell you not a good idea.

[PBCRobert Partner in reply to Lawyers]

In best practice, as highlighted in EASL guidelines, biopsy is best used when there is doubt about a diagnosis.

I am a non-clinician in the UK. I am a patient advocate, amongst other things.

If a dr sees a biopsy result but no signs of PBC are present, that means no signs of PBC are present in that biopsy. It does not necessarily mean that the patient does not have PBC.

I hope that helps.

Robert.

[Lawyers in reply to PBCRobert]

What do you mean by non clinician. Now you have me worried about my results. CT scan showed normal liver size. CBC normal. Only alt ast and now alkaline elevated. Spleen normal size and some inflammation of bile ducts. Portal ducts fine. Plattelete well within normal range. Do I need to question my liver doctor?? Have had high ANA and AMA since 1998. Believe I have overlap with AIH. But asymptomatic.except for itching from grovers disease diagnosed by biopsy a year ago. Should I get second opinion. I am questioning everrything.

[PBCRobert Partner in reply to Lawyers]

I have sent you a message. There is nothing that I have said that would negate what your clinicians have said. So I am not sure why you are worrying. Feel free to reply in private message.

Robert.

[Lawyers in reply to PBCRobert]

How do I do that?

[Chrisprio]

Hi Zlle,

Welcome to this group and I hope you find the connection you are wanting here. I don't post very often but I do check in every now and then with what people are posting. What is clear is that PBC affect people from all walks of life with wide ranging concerns and views, and what is heartwarming are the connections and care that this site allows to happen.

I'm really grateful for the PBC Foundation for hosting this site (if that's the right phrase). And I would definitely agree that you, or anyone with PBC, should join the Foundation. They are the best, most informative, source of clear, up to date information about all aspects of PBC. They have a website, magazine, phone app, and (invaluable in my early days of diagnosis) a phone line. In the UK they also host "Living with PBC" days around the country. And again in the early days of my diagnosis I traveled hundreds of miles to go to one and I consider it the best thing I ever did in relation to my disease awareness, self management and my relationship with, and choices I had regarding, my clinicians. And, with Robert hosting it, it was a huge amount of fun! So I'm pleased to see that Robert from has posted in your thread. Wise words.

I do hope you settle in to your new state Zlle and that life treats you well,

Best wishes, C