PBC Foundation
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NEED SOME AVISE

HI, ITS BEEN A WHILE SINCE MY LAST POST. A LOT HAS HAPPENED SINCE. WELL LET ME START, WENT TO THE HEPATOLGIST ON NOV. 10 AND SHE SAID I HAD OVERLAP SINDROME WHICH I STARTED ON PRED AND AZA. BUT BEFORE STARTING MY LAB WORKS WHERE 50% MUCH BETTER SINCE I WAS FIRST DIAGNOSED WITH PBC AND TAKING 1 GRM OF URSO. WELL 15 DAYS LATER MY NEW LABS REPORTED NO CHANGES AT ALL, WITH SLIGHTLY HIGHER GGT AND AST/ALT. SO SHE SAID NOT TO WORRY, BUT A MONTH TAKING AZA MADE ME VERY SICK, WITH NAUSEAS, VOMITING AND AN UPSET STOMACH ALL DAY, SO ON DIC 15 THE DR TOLD ME TO STOP THE AZA AND JUST CONTINUE WITH PRED AND URSO. SO YESTERDAY I TAKE MY LAB WORK AND GUESS WHAT....... THERE IS NO CHANGES AT ALL. BUT THE GGT IS HIGHER AGAIN, ASO THE FOSF. ALC.

THIS HAS MADE ME INVESTIGATE THAT THE PRED AND AZA HAS DONE THIS TO MY ENZYMES. BEFORE TAKING THEM I WAS MUCH BETTER. THEY HAVE NOT CONFIRM THE DIAGNOSE OF OVERLAP WITH A BIOPSY, THE JUST SAW THE LAB AND SAID I HAD IT BECUASE I HAVE AMA AND ANA POSITIVE. BUT IN PBC YOU COULD HAVE THEM BOTH POSITIVE RIGHT??

I AM SO CONFUSED THAT I AM AFRAID OF WHATS NEXT. DO YOU HAVE ANY OPINIONS O SIMILIAR CASES. I DONT KNOW THAT TO DO.

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Personally, I would not accept the overlap diagnosis without liver biopsy to confirm. The clinical practice guidelines indicate that biopsy is necessary for dx. Given the effects of the medications I would want to feel sure that the overlap dx is correct.

Here is excerpt from the Journal of Hepatology - clinical practice guidelines regarding dx of AIH overlap--

" The Paris criteria are most commonly used to define the presence of PBC with features of AIH, and have been endorsed by EASL. According to these criteria, a diagnosis can be made in a patient with PBC with at least two of the following:

(i) ALP > 2 x ULN or GGT> 5 x ULN.

(ii) AMA> 1:40.

(iii) Florid bile duct lesion on histology.

And two of the following three features:

* (i) ALT> 5 x ULN. 


* (ii) IgG serum levels > 2 
x ULN or smooth muscle autoantibody

(iii) Moderate or severe interface hepatitis on histology.

Liver biopsy is however considered mandatory in clinical practice.

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Biopsy not mandatory where I live. Fibroscan is replacing biopsy with many doctors. Gives overall condition of liver, more so than biopsy. Sorry.

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I had the latest fibroscan it has another name I also had to have a liver biopsy to check for everything including aih . I was pleased that I did . It all confirmed PBC only

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I think the biopsy is warranted in the case where AIH overlap is suspected ( believe this is what the poster's issue is ).

Some years ago when my LFTs suddenly deteriorated, my Dr organised a biopsy to rule out ( or confirm) AIH overlap ( PBC already diagnosed years before).

Hope this makes sense

Karaliz

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Yes it does. I apologized for my comment. Just got ahead of myself. 😊

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No worries !

Keep well.

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Tks. You too!

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If biopsy were mandatory, dr’s would be in deep shit for doing fibroscan.

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I sat that for diagnosing PBC only, not AIH. I’m sure if my GI ever suspects AIH he may suggest biopsy. Until then...

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Sorry if I wasn't clear regarding need for biopsy-- I was only addressing diagnosis of AIH. The guidelines I quoted are from the EASL guidelines.

Professor Jones from the U.K. (internationally recognized expert on autoimmune liver disease) helped craft the guidelines. He also states-

Quote:

Although AIH overlap with PBC does exist, it is also over diagnosed,’ says Professor Jones. ‘It is important to confirm that you do have AIH before you are started on treatment as some types of steroids, for example prednisolone, can substantially decrease your quality of life.

‘If there is any doubt about diagnosis, a liver biopsy will help to confirm or rule out AIH. Although biopsy carries a risk of bleeding, in this case I believe this risk is worth it as it can spare you a lifetime of extra medication if you have been wrongly diagnosed with AIH.’

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Please accept my apology.

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In the US, ANA range is <1:40, not AMA. AMA is <.20

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Biopsies help with a diagnosis if unclear from other avenues. Believe it is still considered the "gold standard" in the US.

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easl.eu/medias/cpg/Primary%...

Link is to the 2017 guidelines document.

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Hi there

When I first got dx six years ago they thought I had an overlap because ama and ana positive so was put on pred and aza and was really sick all day. Then after biopsy was only pbc. I am still ana positive so it can happen. Hope this helps

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I have Ama and ana positive its not unusual, a liver biopsy will rule out what you dont have and confirm what you do have its the Gold standard here at University Of Michigan where I am a patient.

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