PBC or not!?

[Aussielouise]

Ok folks. What do you think?

Just had an ercp with sphincterotomy. Dr removed stones and sludge. Gastro dr now things that maybe I don't have PBC because my Lfts have almost apart from one, which he couldn't remember which one, have returned to normal after years of not being normal. He did say it could just be a fluke because I'd been on a fluid only diet and bed rest and it's only two days post ercp. He did say he's spoken to my liver specialist who still thinks I DO have PBC.

I have a positive AMA and ANA a positive liver biopsy for stage one ; (gastro dr thinks it could have been the biliary obstruction by the stones rather than PBC causing the destruction in the liver)

What do you think?

Do I have PBC or not 😬

[Jo_Br]

I am recently diagnosed, but everything I have read so far from the PBC Foundation in answer to this is that once you have PBC, it's for life. It sadly does not go into remission.

I have seen members ask regarding cures, Drs telling their patients it has gone and it's something I and probably many have searched for.

I think I found the best answer in an older Bear Facts magazine on the PBC website.

This was a reply from Professor David Jones, Consultant Hepatologist, Freeman Hospital,

Newcastle to somebody told they no longer needed to take Urso (not sure if you take it or not) but their blood tests were all normal and told he was in remission, it's here for you.

pbcfoundation.org.uk/upload...

I feel for you as to hear PBC has gone away or is cured, is what we all want to hear.

[Aussielouise in reply to Jo_Br]

What my gastro thinks, is that I never had PBC! That's the stones caused the damage in my liver not PBC.

He said he'd spoken to my liver specialist , he's the one that referred me to him, but my liver guy doesn't agree. He said it's PBC! Blood tests are pretty conclusive !

[Hidden in reply to Aussielouise]

Hello again Aussielouise.

Reading your posting again, you have stated you do have 'positive AMAs' so I think this is probably why you were diagnosed originally with PBC. That and at the time your abnormal blood checks.

[DonnaBoll Administrator in reply to Aussielouise]

With a + AMA and elevated liver enzymes, I think the diagnosis of PBC was likely correct. I would be hesitant not to continue to take Urso - it won't hurt anything. My sugggestion would be to continue having your liver enzymes checked every 3-6 months, keeping track of the overall trend of the results. Someone stated that PBC does not go away -that's right. I would keep tracking your liver panel results. In the meantime, live life to the fullest!

[jane1964]

I would go and ask the liver specialist if it were me.My liver function tests were normal for around 4 years after diagnosis but despite this I have pbc and now have cirrhosis, so I don't believe liver function tests tell the whole story.I hope you recover well from the ercp soon.

Best wishes Jane.

[Aussielouise in reply to jane1964]

How long did it take to develope?

[jane1964 in reply to Aussielouise]

I have been diagnosed for around 7 years, with abnormal liver function test for last 3 years or so.The Urso worked for a while but in last year the alkaline phosphatase has risen back to what it as before I stated urso so it's not working so well now, the cirrhosis was diagnosed 6 month or so ago.I think I first started with symptoms around 13years ago aged around 40, at first I thought I was just getting older, as fatigue was the first symptom and it remains the worst one for me.

Jane

[Aussielouise in reply to jane1964]

Thanks for replying. I'm finding fatigue hard to cope with too. I do think PBC fits with everything I've read. Just wish I could get a straight answer. My gastro is a lovely man. He said he didn't want to see me with PBC as a diagnosis. But I think maybe he's just being hopeful. Anyway I see the liver specialist in another month so hopefully he'll clear up the problem.

[DonnaBoll Administrator in reply to jane1964]

You said the Urso wasn't working as well now. Are you on any other medication like fenofibrates or Ocaliva along with the Urso. These are reasonable options unless someone has advanced cirrhosis liver disease. Maybe have this conversation with your liver specialist. I hope you are having regular Fibroscans to monitor any increase in stiffness or cirrhotic changes in your liver. There is nothing easy about PBC, is there?!

[jane1964 in reply to DonnaBoll]

When my alkaline phosphate blood tests became erratic and we're going up I was also unwell and seeing rheumatology the liver doctor thought this was worsening the pbc eventually I was diagnosed with a type of vasculitis and put on azathioprine an immunosuppressant. This unexpectedly improved my liver blood tests and fibroscans over time leading the liver consultant to believe maybe I have what he called overlap syndrome pbc plus another liver condition. I haven't had a biopsy so it's not certain but I feel extremely fortunate in the outcome I now have of normal blood test results. I still have the fatigue etc .

[DonnaBoll Administrator in reply to jane1964]

Any other inflammatory disease or stress can cause your numbers to go up. Glad to hear about your numbers being better. Often only way to diagnose another liver disease - like AIH - is from a biopsy. Hope u r getting labs repeated every 3-6 months. Keep me posted on your numbers and how you are. Fatigue is such a part of PBC , isn't it? Actually any type of exercise can may. Rest when you need to though. Listen to your body.

[Hidden]

Hello Aussielouise.

I was informed PBC is for life once diagnosed. I started itching early 2010, by December I was on urso and stuck with PBC diagnosis. Had I never started itching I'd have been none the wiser.

My LFTS (liver function test) and GGT blood tests were higher than normal early 2010 and though I've been taking urso now for over 6yrs they are still higher than normal but considered 'OK for PBC'.

Apparently LFTs can return to normal after diagnosis. I know when I got my print out of the bloods I had taken at intervals during 2010 I noticed that the ones my GP did early August 2010 when he referred me to local hospital Hepatology Dept were higher than the first ones I had taken at the hospital early November 2010 and I'd not been taking urso nor been on any form of medication and they had dropped considerably naturally. I think that the LFTs can drop then but to me I think it just means that the PBC might be at a slower rate or come to a halt that might not be temporary.

I do believe that PBC can stop in some and maybe never continue to progress very far but in others it just chugs along at a slightly faster rate. I think this might be why some who do have a recheck of the antibodies AMAs might have a low reading at a future date than when originally checked (mine were said to be of a 'high titre' in 2010, this along with itching and at the time fatigue plus abnormal bloods gave diagnosis). I've never had a recheck of the antibodies and to myself it wouldn't be of much help.

It's said that a liver biopsy shows changes in the cells throughout and this is how PBC can be diagnosed if there is any doubt (I've never had one, living in the UK if diagnosis can be defined by other means as mine was it's not performed).

[Aussielouise in reply to Hidden]

Thanks for taking time to answer. I can't understand how I can't have PBC if my AMA and Ana are positive. My biopsy said PBC and my lfts were in the right combination for PBC. I think the gastro is just hoping it isn't. I've only just started seeing him after seeing another gastro for years to treat my SOD. I really like him and do think he's very good. He was the one that first thought PBC and sent me to see the liver specialist in the first place. He's the one that said he agreed that I should have the ercp and he was right about that as I did have stones in my bile duct, and he said he was surprised at how tight my sphincter was.

But I cannot see how it isn't PBC. All he seems to be going by is the improvement in my lfts post ercp and the fact that maybe it's been a chronic obstruction that caused the damage seen on the biopsy. Thinking about I though, I did take urso for five weeks and I'm on tamoxifen for breast cancer which has also been shown to bring lfts down. It was once proposed as a treatment for PBC.

[Hidden in reply to Aussielouise]

Hello Aussielouise.

It could well be that due to this blockage your bloods were higher and since having the investigation your blood work has improved. Even taking any other medications can cause our LFTs to alter so this might be how it is for you.

Hopefully since ERCP you might now see some changes and feel heaps better.

[PBCRobert Partner]

The AMA and ANA positive results are separate from the stones. AMA+ is not enough to diagnose PBC (though ANA+ if in a rim is helpful). A diagnosis needs abnormal liver biochemistry or a biopsy result to confirm.

That said, stones and bile blockages caused by the stones can cause liver damage (which can normalise after stones being cleared).

I would suspect that your body will need time to adjust from the stone blockage (and clearing) to normalise. So, it is entirely possible that the stone clearing has solved your problem. It may also be possible you have PBC. It may even be that the stones and issues from them are hiding your PBC!!

It is good that they are investigating so thoroughly to get to the answer, for all I understand your frustration at still not being told a straight answer (yet). Time and communication will provide the answers.

In the menatime, you would be welcome to contact us directly to see if we can answer some of your specific questions.

Yours,

Robert.

[teddybear7]

Well I'm not a Dr but isn't a biopsy conclusive?

[saurini in reply to teddybear7]

I had a biopsy last month and had the slides sent to my liver specialist. He told me that because the liver is not homogenous, they might tell the whole story. For PBC, the cut of the tissue may or may not show damage or blockage.

[DonnaBoll Administrator in reply to saurini]

You are so right about this

[DonnaBoll Administrator in reply to teddybear7]

No, it isn't. It's thought not to be necessary if you have a + AMA and elevated liver enzymes. A biopsy really only takes 1/50,000 of your entire liver. It will not find PBC if the tissue sample isn't taken from exactly the right place.

[Hidden]

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