Newly diagnosed what does my future hold

I am Charlotte. I'm 30. Just been diagnosed with PBC waiting to find out who's stage I am by ultrasound. I have positive AMA and slightly abnormal liver function. 135/130 doctor said.

I love my life before this I considered myself the luckiest woman alive. I have a beautiful 15 month old son and wonderful wife. I am terrified of death of what happens to Me and the thought of leaving them just breaks my heart. So scared I won't see my son grow up or grow old with my partner. Feel like been handed a death sentence and can't stop crying.

Read that I might only live ten years. Someone tell me something positive.

31 Replies

  • Hi try not to worry but we all feel like that at some point, I've been led to understand that pbc is slow to progress so you will live to see your son grow up and see his children too. 😃 have you started urso? Try the pbc foundation website and join they have a great newsletter and do self management meetings around the country and have local contacts Robert is fab at those and will give lots of info and advice. Xx

  • Thank you. Scared stiff of dying and not being here to see my little boy. Has anyone on here ever got to stage 4 and needed a transplant?

  • Hello Chazzy,

    It is such a shock I know but it is a slow moving disease hopefully the drug the doctors give urso will work for you.I have had the disease diagnosed for 7 years but probably for 12 the urso has worked for me my son was at primary school when I was diagnosed and now is at university,my liver function has returned to very close to normal and I think I can realistically hope to see my grandchildren one day.

    Also there is a new drug being tested likely to be licensed sometime soon obeticholic acid so soon there should be another option to urso.

    I suggest you join the pbc foundation they are really good lots of good advice on the web site and you can phone them and they are always helpful.Hopefully in time you will get used to the idea of pbc , life isn't always easy with pbc but can still be good and hopefully long.


  • Thank you so much Jane. Just so frightened I'll be stage 3/4 and urso won't work. What is the other drug?

  • Hello,

    The new drug is obeticholic acid I have read that it's being considered for fast track licensing in America and there are trials I have seen recruiting in uk using it as well as Urso, I am considering them. I am going to see what my consultant thinks next time I see him as up to now Urso seems to be working.From what I have read on the internet the new drug seems to work for some people for whom Urso doesn't, and it works differently, so it's good it's going to available.But hopefully Urso will work for you it has so far for me.


  • Thank you. Can't sleep for worrying. It's all I think about day and nigjt

  • Its a total shock initially -my husband has liver disease from haemachromotosis and needs a tranplant. He was diagnosed last year. The first few months I couldn't think about anything else but as you gain more info knowledge and get support from this site it does get easier.

  • This is how i was at first. You read so much rubbish you know nothing and its scary being told you have a chronic auto immune disease.

    I joined the pbc foundation stopped reading the rubbish and have got my head round it. Diagnosed on 1st Dec. I have had ti chase up my appointment at the hospital though. Should have seen specialist in 3 months. It will be 7 when i get there. Alk these strikes im thinking.

    I felt rubbish healthwise for first 6 wks on urso. But now feel great. Its not all bad.

    Take care Louisa

  • Just don't want it to be real

  • I was told it had been caught early with me. Put straight on urso.

    I think positive instead of negative (most if the time). That helps. I look at this way i have a illness. But i feel fine other than fatigue at times. I eat well look after myself. Stopped drinking alcohol which I only did occasionally. And i hope to lead a long healthy life yet. Im 46 have 3 beautiful daughters and 2 gorgeous granddaughters im going nowhere 😊

    Give it time youll get your head round it x

  • If I have to have a liver transplant does that cure it?

  • How long have u had it?

  • Please don't worry I have had PBC for 12yrs and take 250mg of Urso per day and my life hasn't changed at all. I was petrified at first like you this thinking my life has finished but please be assured one day you will see your little boy grown up and may even be a Granny. Get in touch with the Pbc foundation they are brilliant. You don't say where you are from I live in Essex and would help you if I could.

  • I'm in Wakefield. Just can't cope with it. I'm ok for an hour then in tears again

  • Have you gone through stages?

  • Have you gone into another stage?

  • You will read lots of good advice on here, but one that I urge you to follow is call the PBC foundation and speak to them ,they have the most updated information. You can join on line, there are even past issues of the bear fact magazine, when I was first dx it was the readers letters that helped me the most.

    I was dx 7 years ago, and I feel pretty much the same as I did then, my liver has been stable throughout this time. I don't know what stage I am it's not something I needed to know and I never bothered with the biopsy to find out as my consultant agreed with me , as it's slowly progressive. Do contact the Pbc foundation you will feel so much better for it. Take care.

  • I've joined it but can't log in not got a username or passeord. Was thinking about ringing tomorrow

  • They might take a few days to get back to you as it's quite a small (but very good) charity. If it eases your mind though give them a call - don't forget it's a bank holiday tomorrow. Take care. Adele

  • Hi Charlotte. As everyone has said just don't panic. The internet can be a wonderful thing but it's also a dangerous tool and gives the worst case scenario. I've only recently been diagnosed and have yet to be put on anything but my consultant has said to my GP he'll likely put me on Urso. It's definitely scary at first but joining this forum is one of the best things you could have done.

    If you read through lots of the posts on this site you'll see the common theme is that more people die WITH PBC rather than FROM it. You might want to check out a course that's currently up and running on the internet that'll help you understand some of what might be happening to your liver (run by Birmingham University). Here's the link:


    It's already started but it's pretty easy going so you can still catch up on it (just finished week 2).

    There's also the British Liver Trust website.

    First step though is to join the PBC Foundation. They have lots of answers for you and will help you think of the questions for your doctor.

    When you speak to your doctor too - get details of your various liver function tests - it's not just one test. One of the key tests is the M2 antimitochondrial antibody - it's a marker for PBC. If the test you're talking about is for alkaline phosphosate mine was 135 i.e. just over the norm upper limit of 130, but I had other results that were substantially higher than the norm. You'll find you'll quickly become an expert on this type of stuff - I keep track of all of my results to see what's happening. I like others have also given up on drinking. PBC isn't drink related but anything that puts additional pressure on the liver is to be avoided or reduced (to my mind anyway).

    Urso does seem to work for the majority. I'd suggest that you make sure you get referred to a liver specialist unit/consultant though. You might have a brilliant GP but I think someone who specialises in liver function disease has to be better and more up to date on any new treatments that come along.

    Keep us all posted on how you're getting on. You'll find lots of support and good advice from many others here. Best wishes for a long and happy future. Adele

  • Thank you. Gp only named that one test and don't even understand what it's for. Terrified of my ultrasound tomorrow and maybe finding out about what damage there is. Keep trying to tell

    Myself that even if I'm stage 4 could have sliver transplant but don't know what life expectancy is when you have had one

  • I'm sure people here will correct me if I'm wrong but if your symptoms are mild and you don't have jaundice it's unlikely you've progressed to needing a transplant. There's more to it than that but I'm still waiting for an ultrasound myself and I was told a number of months ago it was almost certain I have PBC - but my consultant wasn't panicking about what stage I might be at and didn't see any real urgency in getting the ultrasound. I saw him in early April and don't get it until mid July. Stay calm. Once you get the PBC Foundation access and see the information it might help ease your mind. I know it's easier said than done but don't worry until there's something to worry about. PBC isn't an automatic death sentence. You'll hear about lots of women who live to a ripe old age and it's usually something else unrelated that finally takes them from us.

    I understand totally how you feel - most of us go through that at the start and again the internet feeds the fear. Wait until you know more and have some good information and knowledge at your fingertips and you'll feel a bit more like you've got your life back - a different one yes, but not necessary debilitating.

    I'll 'follow' you on this website and keep in touch. In the meantime enjoy life, your son and partner.

  • Hello, sorry you are feeling this way, I have only just been diagnosed and am waiting to see my consultant again next month to find out more but I am feeling positive, this desease can take years to progress especially with the help with medication and the way this world is evolving they will find another medication that will help or even treat it in another 5/10 years so don't feel like your life has ended all ready, think positive, rest when you can, try different things to help and make the most of your life, enjoy your little one and don't let this desease get you down, good luck ;-)

  • I too worried myself absolutely silly when PBC was mentioned, looked it up on the Internet and imagined the worst. The reality was, when I saw the consultant he explained that most people who have PBC don't know it and die with it and not because of it! If they think you have it it's because you have some symptoms and the ultrasound is just one part of deciding how to treat it. I had very abnormal liver results for some years - I had an ultrasound and a biopsy, now have regular blood tests, take Urso and I honestly don't worry about it. I get fatigued (it's not tiredness as I explain to others, it's a different feeling altogether) so I pace myself, I get some itching but it's manageable, and I just get on with life. I figure that life is too short to waste a precious moment of it worrying about something that may never happen. Good luck xx

  • Hi

    I had pbc for over 22 years before it became stage 4/cirrhosis and when I started with it there was no medication as such, not for some years. Now there is Urso and I hear it is a great drug for PBC and I am on it now....though only for three months as no one suggested it and I never thought having PBC except that I didnt drink much and was careful in some medications so. don't worry too much and you certainly dont need to worry about transplants etc..I,m not and I am way further down the line than you. I have few symptons luckily except a bit tired. You will have years and if you should in later years need a transplant they are very successful. You have the age for one and will do until you are 70! I am unfortunately in my mid sixties so time is not on my side.

    I will die because of the use pretending it doesnt happen but I still have 10 years to go dr says and remember I have had PBC for a long long time without medication and a full and busy life so all in all you have an excellent chance of living a good life well into late age!

    Good luck To you

  • Bless you

  • As Bobbycat, I am at Stage 4 now, with little prospects of a transplant due to my age. My cousin and I were both diagnosed with PBC 27 years ago - she had a transplant 18 month ago and is doing well. When I was first diagnosed the biopsy suggested I was in Stage 2, so it has taken me 27 years to move from Stage 2 to Stage 4 - BUT, as we are all different, and experience PBC differently, some of us progress faster than others. What I'm trying to say is, there is no set progressive rate with PBC.

    One of your questions above was: "If I have to have a liver transplant does that cure it?" - (this is purely my opinion) no a transplant doesn't 'cure' PBC. PBC is thought to be an autoimmune condition, so to my way of thinking, that means that even after a liver transplant the autoimmune system will continue to attack the bile ducts of the 'new' liver in the same way it did with the 'old' liver. I don't know the specific number, but there are many transplantees (spelling???) who have recurring PBC, but there are also quite a few who are many years post-transplant and have not experienced a recurrence of PBC.

  • Please, don't cry, it's just an illness, which if we changed our lives, can stay with us for long-long decades; so many people unidagnosed die of sg else very old. Here we met some 80 years old lady with it. I have this friend for 15 years, and definitly not feeling death near. Read here and on the proposed by many PBC site, be a little happy every day, play a lot with Your son, laugh. It is a shock, but learn about our FRIEND and go on! Write again, be better :)

  • Don't feel like I can eat anything in case I'm making it worse. So miserable always been so afraid of dying and feel like been handed a death sentence don't know how to get over it

  • you must eat! live well and realise that many many people have PBC and are living good and happy lives....far more so than with some have no death sentence a way you have had the opposite...You have a chance to get medication early and help and this will see you through many many years.

    So look on the positive if you can......and I do

    hope your Ultrasound went O K.....let us know

  • Ultrasound came back normal. Not sure what that means but thinking its positive. Feeling better in myself and eating properly too x

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