PBC Foundation
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Autoimmune cholangiopathy

I was labelled with this recently, after knowing I had some vague AI liver disease which was quite stable, for about a decade. The sppecialist is a bit uninformative so i've been reading up - to try and understand what this might mean for me. I'm being treated with immunosuppressants - at present prednisolone, and to begin on azathioprine in a few weeks too. So my question for you all is this: Is it similar to 'AMA negative PBC'? Or is it another condition? Has anyone else got it? Any info would be very useful really, then i can make up my own mind what i think :-). Over the years I've had several labels and now I'm very confused.

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From the tiny amount i know you have both, PBC and autoimmune hep/ We all seem to have more than one immune disorder, so I have always thought the whole immune system should be looked at.

I am going to see an immuologist at the Bromptom, as my chest consultant thinks I have other immune disorders that need addressing as a whole.My Gastro consult is pretty useless and more than unhelpful. I am very lucky to have such a good respiratory consult has had more input and been of more help than the gastro.I have 3-4 immune disorders so fingers crossed will be nice to see one person who can see me as a whole person!!

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Lisacj, you make some good points. And this is what i had surmised I had, which explains a lot of my symptoms (like you and others, i do have several AI conditions). I am quite irritated by my doctor's inability to just tell me this, which of course will not actually change progress or otherwise, but would mean I can understand what is happening (and what club to join!) .... I am, though, just a set of lab results and nobody has suggested immunology for me. I am okayish with this, but if things get worse, will ask in the future for a referral. I think my liver specialist seems to know what he is doing re-my disease (I do sometimes wonder how I'd know this but he does eem to have a plan of sorts) - he just doesn't seem to like patients with inquiring minds.


I have 7 autoimmune diseases, the 2 big ones PBC and recently diagnosed Pulmonary Fibrosis, believed to be caused by autoimmune issues.


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