Stage 2 to Stage 4 in 13 months

I was diagnosed with Stage 2 PBC in 2004 and I am a rare case because I am ANA negative. I had an MRI done in December and the results showed I have moved from stage 2 to stage 4 in 13 months. Had a biopsy at Mayo in Rochester on Monday (4 days ago) and results are still not in. Anyone else had the disease progress so rapidly after being in one stage for 12 years?

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  • Parker9533,

    Wow, I'm so sorry to hear this. I haven't read anything like this, except that, stages can overlap and most often do. I have so many questions. What has your diet been? What symptoms have you been having this past 13 months? Could it be possible that during the last 12 years you didn't realize you we're progressing into another stage? Could other medications you take have played a factor in this? What are your doctors saying? Finally, how are you feeling? Please know that we are all thinking about you. Please keep us posted.

    Prayers for you too. Your in good hands there I think.

    Stella

  • I do hope the results from the biopsy are better than you are expecting. I was under the impression that only a biopsy (officially/formally/diagnostically) can diagnose and also 'stage' PBC - and even then some consultants don't like to do the staging. I didn't think an MRI was enough to diagnose/stage.

    Also, do you mean AMA negative? The presence of AMA-M2 is one of the classic diagnostic features of PBC - although, yes, about 5% of people with confirmed PBC do not have AMAs. However, I thought ANA was connected to something else.

    Please contact the 'PBC Foundation' (link at the top of this page) and talk to their trained advisors, they can give you more exact help and advice.

  • staging is difficult as depends ehich bit they biopsy. i was stage 4 18yrs ago but that was a particular bit of the liver.

    a bit like saying a carpetis worn out it still could be fine around the edges so a biopsy as far as I know is not that accurate... its probably a better guide to look at liver function blood tests... hope that helps. i am noe being asessed for transplant but supposedly hsve been stage4 all these years. best wishes cazer

  • Sorry to hear that 😥

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