British Liver Trust

Primary Biliary Cholangitis

Hello,

I was originally told I have Autoimmune Hepatitis by my GP because of high enzyme counts. I just had a liver biopsy and found out I have stage 2 PBC instead. I see the internist in two weeks to determine a course of action. I would really like to hear from others who have this and what to expect. I have done research on it, but it's not the same as learning about this from others who have it. Thanks in advance.

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The next thing that will happen is they will probably put you on Urso. This is the medication we take that, according to my hepatolagist should slow down or arrest the progression of the disease. Everybody with this condition seems to be on a different journey as far as how well the medication works. Also, please make sure you get in to see a hepatolagist. They usually have a lot more knowledge about what is going on with PBC. I was diagnosed 5 months ago. Stage 3 severe fibrosis. I think you're lucky they have caught this early enough to help you get stable. Most of us take our medicine and try to get on with it. Try to stick to a really healthy diet and do plenty of walking (which liver doctors recommend). I like to do walking and yoga. Also you can join the PBC foundation. They have a really good website with lots of information and it's free to join. They also have an app for you phone now. Don't worry too much about yourself. Take your pills and go,out and live your life.

Good luck!

Pam

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Thank you Pam. I was, and of course still am, concerned about this, but you have eased my mind. There are no hepatologists where I live, but the internist I see specializes in liver problems so hopefully he can help me. I have an appointment with a gastroenterologist in Vancouver next month - I will see him for a second opinion. Good advice about joining the PBC foundation - I've checked out their website already. You're right about not worrying too much!

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Hi like you I was originally diagnosed with AIH but after my last biopsy it was confirmed that I had aih/ pbc overlap, my doctor used this analogy. She said if I thought of myself as a car , first they found rust on the bonnet and now they had found it on the wheel arches too, she told me not to get excited prescribed urso and aza and told me to get on with life. It's been going ok so far. Samantha x

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Thanks Sammy - good analogy. Glad you're ok so far. How long ago were you diagnosed with pbc?

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I've had AIH for 6 years but after a biopsy in October last year I was diagnosed with overlap pbc. I began urso and aza in May this year so I'm still having monthly blood tests at minute ( hopefully going back to 3 monthly in December) apart from that life is thankfully uneventful.

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Glad to hear it!

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How high were your enzymes?

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My Gamma GT was 136. Mitochondrial Ab Titre was 1:640. Other levels were up as well.

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