Life expectancy for PBC sufferers ?

My mum is 56 and diagnosed with PBC. Her consultant has said she has no scarring to her liver yet and she is taking 1000mg of URSO daily. She asked about her prognosis and was told nobody knows, yet her GP said she could go on for decades and now we are confused. This has devastated our family! Can someone please provide some advice.

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  • When I was diagnosed in 2009, I was 46 and I asked if I wouod be around to collect my old age pension. My consultant said quite liekly and hopefully for a good few years beyond too. The PBC Foundation is an excellent place to get advice and support and they can get you in touch with your local volunteer and support group and give you names and addresses of other people in your area who also have PBC. Please try not to worry.

  • Thanks so much, it's just so scary!x

  • :) it is very scary. But, life is scary. You just have to remember that no one knows how long they have to live and being diagnosed with a longterm progressive illness does not change that it just makes it more apparent and if we are lucky allows us to savour and try to improve that life we do have. Enjoy every minute of your life with your Mum. Aren't you lucky as is she to have you and her family so concerned and loving.

  • That's a great outlook, thanks!

  • I would agree with Junolee.

    It is scary but once you get your head round it, you realise that nothing much has changed. with PBC, it's hard to say what's going to happen next but we do know that it is very slow. Your mum has no damage and if all goes well, the urso will prevent damage. When you all get to grips with it and get more information about what it means, you will find that it is business as usual.

    My one bit of advice to you would be: if your mum tells you that she doesnt feel up to doing something, she means it :-)

  • ps.. the PBC foundation information is excellent

  • Thanks I feel better already. I think it's just hard to hear. We only got the diagnosis yesterday and she had been told it was most likely gallstones, so I think it was the shock factor! I am going to contact the PBC foundation.

  • Hello stokoev.

    I was diagnosed with PBC later 2010 and the consultant informed me I 'probably had had it a few years prior' (to starting with the itch that prompted me after a few weeks of this to seek medical advice).

    I've now been taking urso for just over 2yrs and quite frankly I don't feel as I did at the 'start' in 2010 when I was itching. Yes I still have the itch but it's not as prevalent as it was originally and I no longer get tired (haven't for quite some time now).

    I've never been informed how long I may be here but it was mentioned after diagnose that some PBC patients can go on to a stage eventually where they may require a liver transplant. I knew this already as I stumbled across PBC myself long before it was mentioned and I had the AMA test (Oct 2010).

    Due to being informed I have PBC I along with my husband started to slowly change our lives and it is a case you think more about the free time you have together. We'd rather build up good times now as you never know. No-one knows a junolee has stated how long we have and none of us here may end up at the end of our lives with PBC being the cause, it could be something entirely different and non-connected.

    I do think the one thing we all have now is the power to attempt to look after ourselves even better (I never partook of another alcoholic drink after my first abnormal LFT in 2010. It doesn't bother as alcohol never did as wasn't a frequent/regular drinker anyway).

    With each passing day that goes to a week and then a month and then a year and beyond I can say that for me it has got 'easier' if that is the right word. Altho' I am reminded I have PBC each night when the itch starts around 11p.m. I don't actually see it as something that is at present going to be the end of me. Sure I get a bit nervous when I have been for the bloods as in wht those results can bring in but even now that is starting to become tedious as I am going off how I feel and in a way quite forgetting about them somewhat.

    Good luck.

  • Thanks peridot, your story is very comforting for me as I am starting to realise that this disease can be managed very well in a lot of cases. Hope you continue to feel well.

  • Dear Stokoev, I was diagnosed with PBC stage 3, confirmed with a liver biopsy at the Mao clinic and was put on Urso in 2009. So far, I have stabilized somewhat, still have severe fatigue, and some itching and chronic UTIs and some overlapping syndromes...but by the results of my ultrasounds and lab tests, which are done every six months, I have stabilized ...I was told by my Gastroenterologist, that everyone progresses different but I encourage you to have hope and give your Mum alot of support...It is so true about the fatigue...it can be debilitating ..Good luck

  • I was diagnosed with PBC last year. I went to the Liver Specialist of Texas and had a biopsy. I am at stage 0 but continue to take 1000 mg of URSO also. My specialist told me that I would most likely die from something other than my liver. She told me that URSO would help to keep my liver from being damaged. My husband is an ER nurse and has met several women who have been diagnosed with PBC over 20 years ago and are still going strong. They were told they only had a few years to live but far exceeded that!! They ended up in the ER for things totally not related to PBC. So Please keep your chin up and enjoy each day!! I would also do things to keep your liver healthy!! Blessings, Melisa :)

  • Hi Stokev, your mother is so lucky to have you looking out for her, you are an angel.

    I was diagnosed in Jan 2011. My consultant told me I have a little scarring and signs of fatty liver but even though I have PBC it does not mean I will get cirrhosis, it may never turn into that but if it did there was always the chance of transplant. He told me he would give me URSO which would help to slow down the progression of PBC, I am on 1500mg daily - dosage depends on your weight. I was also told that with just a few little life style changes there was no reason why I shouldn't go on and lead as normal a life as the next person. I can understand your concerns as I had conflicting advise from a registrar prior to seeing the consultant and was frightened to death..I thought my days were numbered...BUT I know different now and have had really good results from taking the URSO..my results were almost normal on my last visit in the summer.

    If your mum is having a bad day, tell her to go with it and listen to her body. If she needs a nap have one, a cat nap maybe all she needs but don't fight it because she will make herself feel worse. When I was first diagnosed I found it very difficult to accept that I had anything seriously wrong with me, I thought I had arthritis, I was in complete denial about the PBC. I used to fight against it all the time until one day I collapsed in work. My Dr said it was because I had been fighting against my condition and it was my bodies way of saying enoughs enough and shutting itself down. I don't beat myself up about things any more, if I feel tired I sleep, sometimes 15 minutes does the trick other times it can be a few hours but I wake feeling totally refreshed and able to take on the world. So what if it takes me 2 days to clean the house whereas before I could do it in a day. If I go shopping or somewhere where I know a lot of walking is involved..I make sure I have plenty of comfort stops or otherwise I pay for it the next few days. So its very important she listens to her body.

    Your mother will be fine especially with having you there to love and support her, and don't forget to take care of yourself too.

  • I have met 3 different people who have reached the stage of needing a transplant and all three of them are doing well. If I ever reach that stage, I will be reassured knowi9ng that they have coped with transplant very well and come through it and back to work within 6 months.

  • Thanks for all the wonderful and very encouraging stories. I feel like I can smile again. Stay well everyone!

  • like me when i was first diagnosed, you are worrying to much. Most people live a long and almost normal life its more a case of changing diet and how you run your life. Talk to the doctors and anyone else that may have some answers but believe me, its more about changing lifestyle than worrying about how long there is left. in my case it made think more about the things i was doing wrong, careful management of health and communication with those around you (including doctors etc) is the key. And don't forget yourself in this your mum will want you to live the best life you can. so get to it she must be very proud of you, keep it that way.

  • Thank you for this comment. I will try to worry less and help her get healthy. Stay well!

  • At the PBC Foundation Conference in Basingstoke last year we were told that, so long as we can take URSO, we are more likely to die with PBC than from it.

  • Thanks I feel very relieved to know that, keep well!

  • I have had PBC for over 20 years tell your mum to live her life as normal if she tired then rest do not let this overtake your life i have 3 sons and was only in my twentys when diagnosed an i have lived life as normal PBC has it challenges but with the right info an meds she should continue to do what she wants we all have different stages that we are at but i do believe if we control our illness an do what we want then the PBC does not control us , it takes time to adjust but she will get there with support from all her family and friends xx

  • Hi!

    I was diagnosed with PBC stage 3, 5years ago just before I turned 65. I also have AutoImmune Hepatitis along with it. I have been on 900mg URSO for 5 years as well as Azathioprine. For me the worst part has been the fatigue and having to re-set my priorities - does my whole house get cleaned today or do I do it in stages?; do I wash dishes after every meal or just rinse them off and wash them in the evening?(OR next morning. lol);usually if things aren't done by noon, they pretty much aren't going to get done that day and it's an "oh well". -:) You learn that some things just are not all that important. The most important is for her, as has previously been said, to take care of herself. Stressin' won't help - just gives a headache. -:)

    We never know what tomorrow may bring. This is just another bump in the road of life, not a mountain.

    Ya'll take care and be blessed.

  • Amen to that Tumbleweed! Eat right, live right, and don't sweat the small stuff. I am 66 was diagnosed a year ago.

  • Thank you healthangel, my thinking also! I was wondering sinse you mentioned

    you were 66 years of age if you could tell me which plan in the medicare plan D will cover those meds for people who have PBC, as I will be 65 very soon.

  • I was told by my consultant the prognosis is good - if that helps you any and I am nearly 76

    Ann

  • There are so many people living with PBC for decades, please don't worry. It changes our life, and good doctors are needed, but first of all: good hope, because it's true, that You can live a long and not bad life with this. There are so many illnesses, which are much worse, with much more suffering. Really almost everybody is full of fears, but slowly we learn to live with it without constantly thinking about it. I remember a woman, who wrote on a similar site: "first two years I was dieing and now I'm working and happy", I've read this when I was diagnosed and full of fears and thought life has ended for me. I think everybody, ill people especially should learn to think every evening, that was again a nice day, how good, that I could experiance it. As for me I learned to enjoy everything what's good, pretty, or just interesting, unusual only this last two years. The diagnose was turned to good like this: I had so many health problems, which now have one clear reason, so I say only: yes, that's for this. Reading this site helped me much, because I learned, what problems can come with PBC, and so no surprise. Also You meet here people, who are in much worse situation, and still keep on. And what I missed so much: You can help her with talking about this, listening to her fears, and giving much love. I think there is an initial phase, when we need to speak about this, but we are not the same, so You will see. It's really 1000 times better than I thought in the beginning :) Hugs to her!

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