Diagnosed with PBC in 2011 after scan AMA and liver biopsy. Blood test annually. No other appointment.

[Pookie18]

During liver biopsy Dr pierced a bile duct causing a leak into my abdomen. This was the first needle then he did it twice more. Instant excruciating pain. Led to a 6 day stay in hospital, on morphine and apparently it was potentially life threatening. !!!!! Since then had gall bladder removed, but am seeing no one regarding the PBC. I am reading that a lot of you are on urso, even with first stage PBC, is this what should be happening. Apart from the annual LFT, I am seeing no one. Is it different in other areas or countries. Thanks

[melbourne]

Did the biopsy show anything?

[melbourne]

Also are your lft not normal? Otherwise I would of thought they would put u on tablets.

[Boysanboys59]

Hi .feel sorry for you that must have been awful.hope you are feeling better now,if the biopsy showed p b c as far as I am aware you should have had an appointment with a herpetologist after,and prescribed urso ,if you haven't .go back yo your gp and see why you haven't,best of luck

[Hidden]

Where are you Pookie18, England or US?

I know here in England it seems the norm for anyone with abnormal LFTs and/or symptons to have the AMA blood check (I had the ANA one too, that was negative) for PBC diagnosis. I followed this route during 2010 and was diagnosed with PBC Dec 2010. I had itching and at the time fatigue. (Fatigue is no longer with me, just itching atnight time.) I started urso Dec 2010.

If there is any doubt here in England with regards to whether you have PBC or any other liver condition perhaps that is questionable then it seems the liver biopsy is performed. I've never had one.

Now as far as I can find out, it seems that someone who has been diagnosed with PBC and who has normal LFTs but AMAs and is asymptomatic, that is minus any symptons of PBC, then it appears urso isn't actually prescribed at that time. After all thinking about it, urso is used to bring LFTs to a low level or normal if possible as that can occur in some (some it doesn't but they remain in a normal range for someone with PBC as there is a differing scale to someone with expected abnormal LFTS).

If you have a PBC diagnosis with current normal LFTs and are asymptomatic then it is usually a case of just monitoring of the bloods to see how they go.

My bloods actually started to decrease naturally in the 3 months prior to having the AMA blood test in later 2010 as I received print-out at diagnosis. Looking at them during 2010 when I had 3 LFTs done, the climb for the 2nd one wasn't much but then there was the drop.

Sorry to read that you had a problem with the livery biopsy and that you were one of the ones with the small risk attached to this procedure. I cannot say back in 2010 if the AMA blood test had showed a negative for me whether I would have been willing to go through with a biopsy. I know I personally wouldn't go through a biopsy now knowing I have PBC. (I sometimes used to think that all my symptons would just go away, that I was over-working myself in a demanding full-time job during 2010 and that I would be all back to normal again. Today if I didn't have the itch I'd not know there was anything at all wrong.)

[Keren]

It depends - I've got normal LFTs but positive AMA, and my hepatologist (who's a leading doc in his field, publishes lots in medical journals etc) won't put me on Urso until my LFTs become abnormal. They're just keeping an eye on me for now, similar to you.

[GrittyReads]

Hi Pookie 18,

I'm so sorry to hear of your ordeal, and that you still do not know exactly where you are with PBC. I also agree with other comments here, that the advice we can offer does depend on exactly what your different results are: and where you are in the world, as the exact diagnosis of PBC and mode of treatement seems to vary from country to country.

I'm in the UK, and have tested +ve for antimitochondrial antibodies (AMAs) for over 20 years (it's a long story, I'll spare you the boring details), but I still have no other signs of PBC. My liver function (blood) tests have been consistently perfect, and all other examinations and scans are still clear [I know ultrasound scans cannot show the damage a biopsy can, but if properly done - and I believe that here in the UK, NHS cutbacks may be affecting the degree of proficiency - scans can test for blood flow rates into and out of various regions of the liver: this rate of flow is affected if there is damage, and is a warning sign leading to more investigation, eg a biopsy. I understand that biopsies are avoided in the UK because of the degree of risk - as detailed in your case - and they are only done if other results demand biopsy confirmation.

Currently, I still have no symptoms of PBC. All I do is have annual liver function tests. For years PBC was never mentioned to me, and it is only recently that a new-to-me consultant labelled me 'pre-symptomatic for PBC' . I have been reliably, but unofficially, told told that this is not a recognised diagnosis - that is, it doesn't exist in the rigid guidelines for diagnoses as laid down by Health bodies. For me the headache here is that it is not recognised by insurance agencies. My GPs take the attitude that I do not have PBC, and that I am just one of the people who test +ve for AMAs but do not have PBC ... although I may develop it. Check what your other test results were, ask others who know (I don't) when and why urso, or other drugs are actually given, and if you have any other doubts or questions, sort them all out in your head, write them down, and go back to your Dr - take a friend or relative, once you've got yhem clued up - and ask for answers. If you are in the UK, why not contact the PBC foundation.

NB Keren, are you in the UK? Is +ve amas your only sign that relates to PBC, or have you got other symptoms? Again (I know others on this site disagree with me on this) just testing +ve for AMAs does not mean you have PBC, or even that you will necessarily develop it. Although +AMAs is one of the main indicators, other criteria (such as abnormal lfts) need to be met for a diagnosis of PBC, and more people test +ve for amas (and don't even know about it) yet will not get PBC.

[Lexi_Img]

Maybe if you are uncomfortable with this doctor you may want another opinion. I have done this and ask for my records to take with me. I hope all goes well with you

Lexi-Ing