Just been diagnosed today

It's been so great to read your posts, it does make you feel you are not alone in this. I have just been diagnosed today and given URSO. As I am both ANA and AMA positive, the doctor thinks that I should do a liver biopsy as well to rule out overlap of both PBC and autoimmune hepatitis. I am very scared about that. I guess I have had PBC for quite a while as I've had elevated liver enzymes for some years but the doctors never suspected it. They just asked about my drinking habits (don't drink at all) and sent me to have hepatitis B and C tested which came out negative and then just shrugged their shoulders. Luckily I've been reading a lot about my symptoms (itchy skin, achy joints, fatigue and irritability) and came across PBC and then I had the tests done and they came out positive. :( I hope it is not too bad as we have just adopted a little boy and it would be my worst nightmare to cause him any pain. I am so worried that the disease might progress rapidly and he will yet again have to face loss after being abandoned by birth mom. My alkaline phosphatase and GGT were around 250. Is that very bad? I also asked the doctor about liver transplants if the condition gets really bad but she said there are very few performed each year (I live in Eastern Europe) so the likelihood of that is almost nil. Oh, and another question, do any of you have low-grade fever now and then associated with aching joints? Thank you for being there! Hugs to you all!

8 Replies

  • Good morning Kristen 10 to,

    I have sent you a private message

    Best wishes

    PBC Foundation

  • I'm sure everyone will tell you that most people die with Pbc not because of it. You have everything to live for and yes you will have a lot to contend with not least the fear of leaving your child ( that's what worried me most) . Eight years later I'm still here and I have some symptoms but generally I live a normal life and hopefully you will to. Liver transplant? It's the first thing you think about. I am 65 and doubt very much if that's an option but regardless I'm sure as with most of us you won't need it. Stay positive, enjoy your life and your little boy. Life brings all sorts of positives and negatives our way . But you seem to have the same information as we all. This site is a godsend . Stick with us and we as a group will stay with you and support as as when we can. God bless

    I live in NZ ..

  • Thank you very much for your support and kind words! Hope we'll all be able to enjoy the blessings of life for a long time to come. I am 42 and I hope the progression of the disease will be slow, very slow as I would like to see our son grow up and graduate. It is good to hear your PBC didn't accelerate much in 8 years and I hope it will stay at this stage for you as long as possible. Take care and wish you all the best!


  • Mine yours tests results were almost same .. I had my Ana and Ama positive , ggt, alp around 200 .. Just do the biopsy and then start urso u will be fine .. Try to live healthy and stress free life .. These days liver transplant is not a big thing so enjoy life if something bad happens then there is always someones liver available to spare u .. my dr says to me that there r lots diseases worst than pbc so just go and chill ur life .. Catious alcohol tho .. I used to love bourbon but not any more .. Now I drink lite beer and wine not more then 2 or 3 .


    Frankfort , Kentucky


  • Thanks for your message! Did you have to do a biopsy as well then? Were you diagnosed with overlap syndrome? I don't drink alcohol at all because I don't like the taste of it. You may be right about liver transplants. I guess in a few years' time they might be more available to people as more and more surgeons train for it and people's attitudes towards becoming organ donors once they pass away might change as well. Hope you'll stay healthy and well and be able to enjoy the occasional lite beer for a very long time. :)



  • Yes krista I did biopsy and result came out normal so they ruled out aih ..I guess Ana and Ama are not diagnostic test for aih /pbc rather they r more organ sespecific like where the ur problems are ..

    Due to liver problem I had to postpone all my Travel plan I was planing to go croriata , Germany and Norway but I will continue next year .. And makes ur thyroid is ok too..

  • Thanks for your answer. I hope I won't have autoimmune hepatitis either. It doesn't make things easier. Sorry for having to cancel your travel plans. Hope you will be ready for adventure next year. We had no definite travel plans but we did plan to travel somewhere for at least a week and we too, had to cancel all plans. At least we don't have to worry about finding accommodation. :) Have a nice summer!

  • Thank u and keep up us update ok

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