Just been diagnosed with PBC

Hi I'm a 48 year old Mum of twins aged 16, went for a routine blood test in May this year and after 8 blood tests (all with LFTs abnormalities), positive AMA and a liver biopsy, I have been diagnosed with PBC - shocked and overwhelmed to say the least - i started taking the medication URSO on Sunday and have started to itch, not to the point i can't cope - i'm pretty scared as I don't really know what lies ahead for me. I don't feel any different to what I did when I initially went for the routine blood test. I know that its a slow progressive liver disease, so will i get worse, will i become more tired, and itchy - its just the unknown that scares me - can I still have the odd glass of wine on a Friday / Saturday evening - any words of wisdom would be greatly appreciated

11 Replies

  • I went for a routine blood test two years ago with the same outcome as you. If I had not gone I am not sure I would even know I have PBC. The urso has brought my ALP and GGT from very high to within limit. This did however take at least 12 months. It is really hard to say whether you will suffer from tiredness and the itch as it seems to effect everybody differently. It takes time for the diagnosis to sink in but this site and the pbc foundation have helped me enormously. Take care.

  • Hi, I really remember how scary it was at diagnosis and I really empathise with you. But the emotional side really does get better, as seems to be the case for most people posting on here. I'd suggest that you get in touch with the PBC Foundation, link above. They are so knowledgeable and helpful and very happy to chat and give you lots of information. There's a magazine that is excellent too. Some people don't get the itch with Urso' but I did, badly for a month or so. The good news is it was temporary, as was indicated on the side effects info leaflets in the meds. Keeping cool, especially at night helped.

    Get as much support for yourself as you can from friends and family, be gentle with yourself, as it takes a while to get your head around. Thinking of you. Cx

  • Hi Chappers2204

    I was diagnosed in 2006. The best bit of information I read at that time was that you are more likely to die with rather than because of PBC. At 48 you have found your PBC nice and early and being on Urso will help to bring your numbers down. I believe that others on here have said they start an itch when first on URSO but it does go away. (I was itch free for many years but am now trying to find something that will stop the itch.)

    When I was first diagnosed I did continue to drink on occasions but as I am a bit older I find I am not so interested any more. We have to remember that whatever we put in to our system has to be processed by our liver. I have found that increasing my vegetable intake and reducing red meat in the diet has been beneficial. I don't eat too much fruit as the natural sugars are also not meant to be that beneficial. Exercise when you can to keep a healthy weight and find foods that suit you. Stress seems to set me off and many will tell you that stress is bad for us as it is with many other disorders.

    Have you joined the PBC Foundation yet? It is free to join.

    Another contributor on here peridot told me about livernorth.org.uk/ which is another good source of information. They have a DVD with some useful information. (Liver North is run entirely by volunteers but they do ask for a contribution for the DVD cost.)

    best wishes

  • Thank you for the mention butterflyEi. Hopefully between us all someone out there in the field of science might just come up with some theory from our experiences and possibly find out how we started with PBC so we can maybe cure it.

  • Hi Sammie7. I was diagnosed in 2003 when my son was just a few months old. I didn't have time to feel much about my diagnosis and just lived as I did before. I had annual check ups until about 3 years ago when they started me on the Urso. I don't do anything different to before diagnosis, eat the same food, drink the same amount of alcohol - couple of bottles of wine or a few ciders at the weekend.

    I was told upon diagnosis that I was more likely to die with PBC than from it - and its mostly found postmortem.

    My advice is stop stressing about it, stop reading message boards (like these ones!) and just get on with your life. :-)

    Debbie x

  • Hello Chappers2204.

    Apparently not everyone gets the itch with PBC and it is said to be of no sign of how we really are doing with PBC. Some develop it and are diagnosed with PBC like I was in December 2010 (I was 46 at the time) and others are found to have abnormal liver function test (LFTs) via a routine blood check.

    My consultant reckoned I'd only started with PBC a few years prior to 2010. At the time I did have fatigue but never thought much of it due to working full-time in a shop manager position. It was the itching that was a different story altogether.

    I've always gone on how I am. I find that I can feel on top of the world, have the LFTs done and then find out that they have risen slightly over what they were the last time (my LFTs have never returned to normal and I've been on urso 6yrs come December) and when I feel I'm not doing that brilliant the LFTs show a different story!

    After time has lapsed and you are still getting on with life and you reach the one year mark with PBC and everything seems to be going well you slowly start to let the worry loose and my motto is to live life now as no use myself spending time worrying about the future and how the PBC is going to become when it might never reach that so it would be unnecessary worry. I decided to deal with things as and when.

    I currently feel I've dropped a notch slightly in how I feel with PBC but I put this down to the fact that I find it difficult to sleep every night due to starting to itch around 11p.m. Broken sleep doesn't make for a full next day of feeling energised come 3p.m. when I feel I could just fall asleep.

    For me the biggest thing to accept when I was diagnosed with PBC (I kidded myself during 2010 as I really did think I was going through a temporary glitch, didn't expect to be informed I had something I'd have for the remainder of life). I'd not frequented a GP over the years and never even succumbed to everyone else's colds, etc at certain times of the year and then I got this PBC. At some point you have to put it all aside otherwise it to me is a waste of time that could be spent doing better things.

  • PS It is said that you can have the odd glass of tipple but I chose not to have after my first abnormal LFTs in 2010. I cannot lie, one cold winter since diagnosis I had a splash of whisky in a cup of tea but due to not being a drinker pre-2010 it hasn't bothered me at all. I sometimes buy non-alcoholic beer. Brew Dog do an alcohol-free beer that is good plus Erdinger do one too. If my husband and I happen to drop by a pub on holiday usually after walking I tend to have a coffee or tiny bottle of pure orange juice.

  • It is most natural to be freaked out !! especially when it comes out of the blue like that. (quite a lot of us find out in shock and horror unaware of any underlying issue. )

    I am not being trite here, but 2 comments you will hear in the future :

    1. every ones journey is unique.

    That said there are lots of commonalities that make sense to share and be prepared for.

    2. you can expect to die with PBC not because of it.

    or in my case receive a liver transplant as when I was diagnosed my liver was already so scarred I only had 18 months from diagnosis to TX (transplant) This apparently is more common in men than women (fast end stage)

    This site will help you understand PBC and receive advice (most of it sensible)

    Good luck with your future.


  • Thank you everyone that has replied so far - comforting to know that I am not alone - I am now a member of the PBC Foundation and will contact them if I have more questions - after reading all your comments my motto is "it is what it is and I have to get on with it - which I will be doing 😀"

    Thank you all

  • I don't have PBC I have AIH which is a little different. But before I started my treatment I was tired and itchy which was Symptoms of my liver disease. I was scared and still stress sometimes over the whole situation. Thankfully 4 yrs later I'm back to feeling like me and everything is under control. My advice is to be positive, follow doctors instructions and get enough sleep and eat healthy when you can. Control the diseas don't make it control you!

  • Hi Chappers2204

    Seems like we are starting our journey with this diagnosis at the same time. I have only diagnosed within the last few weeks and have started medication last week. I was scared, bewildered and unable to comprehend what it all would mean for me. After unhelpfully googling the condition, I thankfully came across the pbc foundation and this site. Like you I posted a request for more info and support. The kind and helpful responses I received, with included people who have responded to you made me feel a lot less isolated and better able to focus on what to do next. i did not get a lot of information from the Consultant when I went to see him, it seems as though a stage in advising me about the condition had been missed. So with some really good advice from other members on questions to ask I have been back to my Gp surgery to get more information. I have joined the pbc foundation received information pack today. My Gp has referred me to a dietician as I have been losing weight due to lack of appetite. My Gp has given me a sicknote initially for a couple of weeks which is just giving me a bit of time without the stress of work, to get in a routine with taking my medication. I will have been on Ursofalk for two weeks at the weekend I have had a bit of abdominal pain, felt a bit itchy and have been a bit headachey. I am just really conscious that since my diagnosis I have been a bit hypervigilant in terms of anything in my body, so I cannot say for sure that any of these things are definitely related.

    I have also contacted the pbc helpline regarding employment advice specific to my current occupation. I spoke with Alan there who was beyond helpful. So I guess what I am trying to say is please don't feel alone.Take care and be kind to yourself x

You may also like...