advanced stage, what does that mean for me?

I was diagnosed in 2009 after severe itching for just under a year, and numerous other symptoms-fatigue, unexplained bruising etc.

I have twice reacted badly to itch remedies and my lft's have frequently been discribed as "significantly raised" the most recent bloods saw both ALT and AST in the two hundreds (that is a fair bit lower than some of my bloods!)

I was seen at clinic yesterday and told that I have "quite advanced Pbc" with obvious cirrhosis. urso has been doubled and am to have 6 monthly scans and regular blood work. i feel a bit shell shocked as at 38 I had thought it wouldnt be until a little later that I would need to discuss transplant issues. Am usually very upbeat about this PBC lark, but news hasnt quite sunk in. Anyone else in advanced stage, what will that mean, what am i to expect? After some frank facts please.

13 Replies

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  • Sorry to hear this. it must have been a huge shock to you. Dr`s etc always seem to say that its a very slow process but everyone is different and none of us really know how we will be affected by it.

    I would hope that after telling you that they will then discuss your options with you. I know i would have lots of questions I wanted to ask if it was me. I hope you get some answers.

  • thanx zipitydoo, he is referring me to another consultant/professor. My own GP is very good so may well speak with her, it is a shock, but having said that i feel a sense of relief as thought I was being a bit weak but knowing that its not all in my mind and I am feeling rubish makes me feel less guilty about my little afternoon snoozes. my husband believed I was feeling worse because I was looking up info on sites like this, but in reality i thought I had AIH and knew something wasnt right so was looking for possible answeres, I'm realy hopeful some one will sugest some good questions to ask at my next appointment and give me an outline of what to expect, I dont like suprises, well not this kind. I always believe theres an upside to everything and have a sick sense of humour so will be fine. x

  • Greetings,

    I am not a patient but only a volunteer.. As such I have read that staging of the disease is not necessarily an indicator of the gravity of PBC. Do not despair, as this affects your body and mind... I would suggest to contact the PBC Foundation office, they are very good at giving proper, accurate and "user-friendly" information.

    Btw itch - just asking, have you tried the classical old stuff - baking soda bath, cold towel on itchy places, etc? Many say it helps, though it seems too easy.

    All the best and be well :)

  • So sorry to read of being told to be apparently 'quite advanced with PBC'. I am 48 in a couple months time, was daignosed when I was 46 but according to the consultant I had started with PBC 'a few yrs earlier'.

    I am not very good at taking medication, have always avoided and even 14mths on still wonder with URSO.

    I think sometimes certain things are best not knowing and I think, 'How do I feel'? Do you feel any different to before you were informed of recent blood results? Myself, I was doing ok with URSO in the first 6mths but on mth 10 of taking and repeat bloods the results had started to dip in the wrong direction again. Been 4mths since I had blood tests, expect the next bloods June apparently.

    As I understand it the only thing that is a sign in the wrong direction is jaundice.

  • Hi -- what did they say you were staged at when you were first diagnosed?

  • hi Dolores, I was never given a stage at diagnoses. however, I was having many symptoms. I have learnt that the initial scan showed some inflamation, but I was only told that this week.I have reacated badly with sertraline and rifampicin and some of my bloods have never been good, with my ALT usually in the 200's.

    infact I asked what stage "Highly advanced PBC" equated to but I didnt get a clear reply so I dont even know what stage I'm at now. I dont appear jaundiced and my bilirubn has always been good (dont know what it was on tuesday)

    The care I have there is very good I just didnt think quick enough to ask the right questions and now the initial shock is fading I want to know what others have experienced and ....well I supose what am i to expect to happen to me.

  • ahh -- as i am in stage 2, i would assume that 'highly advanced pbc' is further along then me -- so i haven't a clue exactly What you can expect -- as i haven't experienced the worst yet -- good luck to you --

  • Hi itchyandscratchy. So sorry to hear your news. I take it you do not have AIH as well then? You have enough to deal with without that! It is funny you should say that your husband thought that you were feeling worse from looking up info and being on this forum. When I read about other people I realise that I am doing okay at the moment. That is all we can do is live in the moment as we just don't know what the future holds for any one of us. I have just turned 47yesterday and do feel lethargic at times and need to sleep. It helps a bit. Keep us all informed about how you get on. Unfortunately I cannot give you any constructive information regarding your advanced condition except to maybe give Collette at the PBC Foundation a wee call. She is great. Good luck. x

  • hi Jtxx, I was so sure it was AIH but no dont think I do, what I had thought were symptoms relating to this was in fact the deterioration of PBC! I will call the foundation tomorrow and am going to chat with local gp who is very good next week. its funny how I feel the need to have the progress staged, its not like its going to make a blind bit of dfference. Think I just need to hear personal experiencs to help make sense of it all and to help me try and prepare for whats to come. strangely dont feel any fear just feel...... unprepared. This where somewhere like this is so useful, support at a press of a button. thanx every1.x

  • The only way to get a definate stage is to have a liver biopsy. My mother had PBC and cirrhosis and had a transplant aged 45yrs. She had other health issues as well and passed away aged 57yrs which was 8 years ago now. She was great after the transplant which she had nearly 20yrs ago. New lease of life although you know that PBC is not curable, even after a transplant. Technology and drugs have come a long way since then so I hope all goes well with you. Take care. xx

  • Hi, Sorry to hear - you are young! I was diagnosed in 1998 (age 44), have been on the transplant list since 2007 (MELD 6), and am now 61. MELD 16.

    I am at stage 4 ("end stage") but have been since at least 2007. I read about a woman who'd just been diagnosed, her sister had been diagnosed several years earlier, and their mother had it for many years and finally died of old age.

    So who knows? I recommend going to a liver transplant center (I have a "team" at Mayo Clinic in Phoenix), take care of your body and mind, and enjoy life! It is what it is.

    Good luck and God bless you,

    Cindi

  • Hi cindi, I have also been in stage 4 since 2005 or 2006. I go to mayo, rochester mn. Do you have varicies and portal hypertension? Are you on transplant list? I am 65 years old and was diagnosed when I was 45 with stage 3. My mother also had pbc. I am not on transplant list. My meld is 11. I just reread your post and see you are on transplant list. What age did they tell you was the cutoff? Love to here from you! Zoose

  • It's been a while but time for a little update.

    Cirrhosis was diagnosed in 2011.

    My health steadily deteriorated.

    13 weeks ago, thanks to a 20 year old girl, I received my transplant.

    I'm getting stronger physically and emotionally, it's been a tough ride and for a short time we didn't think we would make it. Goodbye letters were written and I even bought my little girl an early wedding present in case I want there when her big day came.

    However 13 weeks later, we have had a family holiday and are planning a future. :)

    It was discovered post transplant that my diseased liver also showed autoimmune hepatitis. As a result I will remain on steroids to try to keep the diseases at bay.

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