PBC Foundation
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Confused

Can somebody orient me. I was diagnosing with pbc three months ago and started on Urso with a great response. Then two weeks ago I visited my hepatoligist and she said I had overlap syndrome which I was proscribed prednisone and azathioprina. So yesterday I took my labs and they came back a little higher than two weeks ago. My question is... Is this normal at first or is the meds affecting more my liver. Should I ask for a liver biopsy to 100 % sure of the diagnosis. I need some advise.

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Sorry I can't help as I only have PBC. I do know that your labs can be up and down so try not to look too much into it. Probably best to ask your Doc. or get in touch with the PBC Foundation who are a great help. Take care and try not to worry.

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Hi there

How did they dx overlap syndrome without a liver biopsy

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Just by labs

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Think it would be good idea to have a liver biopsy or fibroscan to confirm overlap

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When I first was dx 6 years ago they thought I had an overlap so was put on the same meds as you then months later done a liver biopsy and found I only had pbc. So I wouldn't worry to much maybe they just be cautious

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Thank you for your advise. I will ask my hepatoligist or my gi to consider a biopsy

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Did you have the asma blood test

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You haven’t done biopsy prior to diagnosis? I also only have pbc sofar!

What results were higher than previous?

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Just Slightly like 10 points.

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What was your previous results ? Are u talking about alp.. test results always fluctuate due to diet, stress and so many things so as long as your results won’t increases steadily you shouldn’t be worried.. 🙏🤗

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Exactly. And I just had a friend that lost the battle to cancer it affected me to much. I will take them again in 15 days. Thank you sooooooooo much.

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You doing too soon do it every 3 months.. thank to god that u don’t have cancer.. pbc is scary still it won’t kill you like cancer..liver takes time to die out and theses days liver transplant is nothing !

Between 3 months evaluate the things like stress, eat , exercise and medicine..u said u have pbc overlap with aih so I don’t know what is your dr. Recommendations but all I know u can what ever u want as long as your live is not cirrhosis.. try to eat healthy and small portion food tho

Don’t get panic. Panic won’t help and pbc is not going anywhere just try live with it.. you are young so don’t even think about dying right now 🙏🤗👍🏼

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Hi Yadiluro. I was diagnosed with PBC Nov 2010. Had Ultrasound scan and Liver Biopsy Feb 2011 and diagnosed with overlap syndrome. Put on immunosuppressant Cellcept and steroid Budesonide. Blood test shoedI am not suitable for Azathioprine in 2012. MRCP July 2012. Fibroscan & Biosy 2013 and after a careful review it was decided I did not have Overlap syndrome only PBC but no cirrhosis, so gradually came of the immunosuppressant and steroid. As you can see it took a few tests to see that I did not have overlap so probably a good idea for you to ask about further tests. To be honest, I dont know how they made the decicion that I did, then didn't have the overlap though. I wish you all the best.

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I only have PBC but I thought they could only confirm overlap via a biopsy. The new European guidelines seem to indicate this. I was just reading it on Saturday. I'd ask for one to be sure. As for bloods I'm responding to urso but mine go up and down. Xx

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I was told that I have over lap as well my friend. I was told that pbc is secondary to my aih. Yes I had a biopsy. What are your enzymes before and after the prednisone?

I was prescribed prednisone first then as my alt began to drop I was told to take the AZA. My alt did elevate once and so did my alp. Did your dr run the igg blood test

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YES THEY DID,IT CAME BACK 1427, WHICH IS ACTUALLY NORMAL. BUT THE AMA Y ANA CAME VERY POSITIVE THATS WHY THEY SAID IT WAS OVERLAP

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I’m Ana negative. I’m not so sure that Ana has anything to do with aih. Please check with the pbc foundation. I’m not sure about Ana having to do with aih

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ANA tests indicate any of the 3 hepatitis, along with RA, sjogrens, etc. my ANA was negative for all except possibly schleroderma.

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Which hepatitis? Aih ?

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Mine were tested in the Hepatitis Panel, Acute. Hep A, B & C.

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Sorry, I just looked back at labs . Hepatitis is not in the ANA😊

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I read that Ana and asma can be aih. Is that true or internet stuff? Lol

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Not sure what asma is?

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Are you referring to AMA?

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Wow. Yes you are correct. That’s good to know. Thank you

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Welcome ❣️

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The PBC Foundation (they sponsor this support site) had a great 8 page insert with Questions and Answers regarding PBC dx and treatments. It's in their Summer 2017 Newsletter. It's free to join the foundation (it's a separate log-in from this "support group site")

pbcfoundation.org.uk

Once you join you can access lots of quality information. Here's a clip from the newsletter regarding AIH overlap. Hope it's helpful.

hugs to all--

Eileen

Excerpt from the Newsletter Insert--

PBC/AIH Overlap

The Guidelines note that PBC can occur alongside another auto immune condition (an overlap) the most common example being Autoimmune Hepatitis (AIH), which is treated with immunosuppression and steroids.

AIH is usually indicated by a high ALT and IGG liver

blood reading.

‘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.’

QUESTION FOR YOUR DOCTOR:

You say I have AIH (or PBC/AIH Overlap) but can you explain exactly how you have come to this conclusion?

Is there any doubt in this conclusion and should I be considered for a biopsy to confirm or rule out AIH?

Patient tip:

PBC is a condition that has a very successful diagnostic

tool in AMA, which is present in approximately 95% of PBC patients. AIH (and thus PBC/AIH overlap) has no such diagnostic tool currently and so is dependent on liver biopsy for diagnosis. There are liver biochemistry tests which are suggestive of AIH as a possibility but they are still not diagnostic.

The treatment of AIH also doesn’t benefit from simple, clear guidelines such as those for PBC. Treatment of AIH is not consistent, either within the disease or within the community, and may need to be tweaked as changes happen to the patient. These tweaks in care are very much dependent on the expertise of the clinician.

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I would encourage a biopsy it’s the Gold standard here it will rule out the guessing game and diagnose you with what you do have it’s a quick procedure rare to have side effects good luck hang in there 🙏

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