Stages of PBC

Hello,I was just diagnosed a few days ago so I'm really still in the shock, dramatic time after hearing this. I have a boy who is 5 & he is all I think of since the diagnosis, it breaks my heart & can't help crying everytime I picture his life without me. I just needed some advice please regarding the stage that you are diagnosed at, are there any symptoms to whether it is at the begining or in a later stage? I read tons of articles the past few days but can't really tell which stage I am at. The symptoms I had started with severe skin rash 4 months ago that lasted about 2 weeks & now I have dry mouth & a little swelling in my abdomen area.

Your answers will help me a lot till my first appointment with the consultant next week.

Thank you

34 Replies

  • I believe everyone is different as to their symptoms and stages. I was recently dx right after having by baby who is now 9 months old so I can associate with your fear. I still have days where I worry I won't see her grow up but then I remember what I was to,d early on by someone on here. "It's more likely you will die with pbc then from it" stay positive and listen to your doctors and learn all you can. I am stage 0/1 and no symptoms but I am doing best i can to stay positive no matter how bad it is.

  • Tough as it is right now you will learn to live With and manage your life around this disease

    The people, on this pbc site, mostly women, are kind and empathetic. I have been diagnosed 9 years and my Specialist says I have had longer he thinks.

    We all think of others my three children you your young child but after the shock of what you may or may never face wears of you will start to focus a little on yourself ...your hopes and dreams and you will need to invest in you and your family equally

    In this even with support you are alone. Try to see the positive aspects of pbc as it affects you.

    Remember this is your journey your life. Pbc has found you try and come to terms with it and get on

    Your symptoms are what will be the measure in the beginning but hopefully things will settle.

    Peace and love

  • Hi N-Sedky,

    I was diagnosed during my first pregnancy and now have two young boys.

    My greatest fear is not being around for them as they grow up, my second is being so ill I'm a burden. There is a lot of information on the internet and some of it is very scary, I've stopped reading most things as I just got to upset.

    PBC seems to effect everyone differently each journey is unique so it can be impossible to predict the course it will take. Personally I have decided to live for today as much as I can, I try to keep myself as healthy as possible, excersize, minimise the stress on my liver and try not to think about the 'what if's' because they were driving me mad!

    I'm lucky, I respond to urso and have had stableish bloods for 16 months or so. I do have a mild itch and some fatigue but I can live with that. I don't know which stage I am at, I was diagnosed over 3 years ago and have had a scan but no biopsy.

    I recommend you do a list of questions for your consultant, write them down as you think of them and I have always found everyone on here is really helpful. There is a Facebook group too that is helpful and a DVD you can get from LiverNorth that explains the illness.

    I hope your consultant appointment goes well and you get some answers

    Big hugs

    Jax xx

  • Firstly welcome to the site and secondly, DONT PANIC .

    Right the next thing to do is join the PBC foundation! They know all there is to know correctly on Pbc.

    READ through some old posts on questions to ask your specialist on here, WRITE them down and TAKE them with you. TAKE. Someone with you who isn't over emotional and they will keep note of the answers, the appointment goes so quick that it's over before you even get them out your bag. Sorry it feels that way, lol.

    Don't get too emotional now as soon you will realise it's not worth wasting the energy, save it for special occasions X

    Good luck with your appointment.

  • I was diagnosed in 2001 and I am stage 4 with cirrhosis but my consultant still tells me that I am more likely to die with PBC rather than from it . Try to enjoy your your little boy as they grow up so quickly rather than worryingyou won't be around to see him grow up. With care from your doctors and regular check ups you will be in good hands. Phone the PBC Foundation as they will reassure you. Good luck x

  • Hi N-Sedky

    For most of us it is a shock when we are first told of PBC for myself after the shock of diagnosis I just went into denial but then I got my head around it and over the last 10 years have settled into the routine of taking care of myself so that I can take care of those around me. I was diagnosed asymptomatic and have never been given a stage. I believe the only way currently in the UK to be staged is by a liver biopsy but that is not always totally accurate as it depends on where the biopsy is taken from the liver in relation to the bile duct damage. I had a liver biopsy over 10 years ago. I have my ups and downs and highs and lows as I am sure many of us who have PBC do. The best bit of advice I read when I was first diagnosed was:- PBC is not a death sentence, you are more likely to die with PBC than because of it. There is also the wonder of transplantation for those who do become really poorly. I think it is also interesting that the name of PBC has been changed from Cirrhosis to Cholangitis to better reflect earlier detection rates and the use of ursodeoxycholic acid (URSO) to slow down the progression of the disease.

    If you join the PBC Foundation (link above) you will find good information in the members section and some useful video clips. have an informative DVD disc which they can send to you for a nominal fee.

    If you are in the USA there is the PBCers.Org and in Canada there is the PBC Society.

    The problem with too much research is you can find some information which can be very worrying.

    Try to eat well, if you use ready prepared meals try to avoid them because of the salt or sugar content and drink plenty of water to keep everything working. Be kind to yourself.

    hope this is helpful to you

    best wishes

  • Thank you all for your kind comments. I guess its just too early for me to think positive right now. I am just scared of everything, scared to sleep, scared to eat anything as it might affect me badly, I cut coffee, milk, cheeses, desserts, all fatty cooked meals, bread & cakes! I don't know what to eat at all, I'm just living on apples & water! Hope things will ease up after I meet the specislist next week.

  • Hi I was diagnosed when I was 43 and am now 66..I am at cirrhosis stage for the last 6 months but many don't get to this stage and I had 23 normal years without Urso even for most of it! so I wish you all the best and please don't worry ..even at this stage I can look after myself if needs must ....however I did give up drinking really...just had the odd glass socially in the past .....but I never drank much anyway as it always made me feel itchy of course I don't touch it..don't miss it at is more important.

  • Hello N-Sedky again. As a matter of fact if you check back on my postings (maybe 6mths ago now) there is an article on coffee. It is actually said to be good for the liver regarding any inflammation. There was a programme on UK tv earlier this year and a scientist actually showed livers of rats she said they were that had been given coffee and without and you could actually see that ther ewas a difference. One of the rats was said to have had a fatty liver and coffee aided. The scientist was Italian of which it was said they are the big coffee drinkers.

    I'd say with PBC changing your diet isn't such a good idea. We need some fat in the diet as we absorb fat soluble vitamins (like D that we can acquire from sunshine, one that we can lack in the UK). I used to have a diet that was lower in fat pre-2010, no fry-ups, chips, etc so I've found it easy really regarding fats. If I have a bit of cheese that I am very fussy about (only like a couple regional cheeses myself) I only have a very small piece that amounts from the packaging to under 100 calories and I do not eat often.

    I often have around half pint milk as you'll find that with having PBC we can actually end up with ill bone health due to vitamin malabsorption. During the hotter months when I go walking with my husband, at the end of the walk we tend to share a pint of milk. From research this has shown to be the most hydrating. Apples are said to be good for dyspesia and I have found the times I've encountered a bti of heartburn, eating an apple seems to work.

    You'll find the general consensus with PBC is to just eat normally but with common sense. I did ask pre-diagnosis and after diagnosis when I was at the hospital. I tend to find as I got older I can eat extremely well of a morning and lunchtime but come the evening meal I have tapered off so don't eat much then.

  • Hi Peridot, oh I wish all those studies about coffee are true! That would be great news:) I just cut/limited it as I read that it causes dehyration if drank first thing in the morning on an empty stomach & since PBC already causes dry mouth & other dehydration problems thought it might be bad?! Hope all that is not true though lol

  • Hello again N-Sedky.

    I have just glanced up to a year ago my postings on here and have copied 2 of the websites I posted and also the image from British Liver Trust re coffee for you (they send me a newsletter via email at intervals). Anyone who missed might like to read through and make up their own mind. The 2 links will take you to a mag I now receive online and you can actually receive free via email the mag for yourself.

    (The image I'll have to use as a new posting it seems, can't see where I can add on this response here.)

  • When I first found out I was paranoid anything I ate would make it worse that I would die sooner. You honestly sound so like me 6 months ago. It's so hard. Xxx

  • Hi I was diagnosed in 2003 when my son was about 4 months old. I still have no symptoms and the last time I saw my consultant he said my results were unexciting!! Nothing has changed in the 13 years since my diagnosis. I still drink alcohol, eat the wrong food (try to limit my diet as I'm on a constant mission to loose weight!) There is no need to cut anything out, just try and live a little healthier but we should all do that anyway :-)

  • Hello Debbiem40.

    Good to read that you have done exceptionally well with PBC. I like reading that you seem to go against the grain with regards to what you eat and drink. I have often wondered if sometimes eating something that we think isn't so good could actually give the liver something more to do and be good. Think known as the reverse effect.

    Unlike yourself though I was never much of an alcohol drinker pre-2010 and I don't really bother anymore if I go out. It did get to me in the early days after diagnosis as pre-PBC it was easy to refuse anyone offering an alcoholic drink if out of a rare occasion but once you have something that you don't deem ideal to drink with, your way of thinking and how you deal with it can change. I'd avoid the situation but as time as gone by I just don't bother anymore, easy to just say no. An odd time I buy a non-alcoholic beer. One said to be good isotonically and with vitamins supposedly is one called Erdinger. My husband likes different beers (has cask when we are out and about and pop in a country pub usually), he is impressed with the non-alcoholic Erdinger (and as I can only manage half a bottle he finishes the rest!). Another good one in the UK is Brew Dog.

  • But Peridot I have never been told to not drink alcohol or change what I eat. Don't get me wrong, I don't binge drink every weekend, but I do like a couple of glasses of glasses of wine at the weekend and a good night out on the town every once in a while!

  • Hello again Debbiem40.

    No I wasn't told to not drink alcohol either when I was diagnosed though I had already mentioned when I first went to my GP with itching in early 2010 I rarely drank after he asked after he received my LFT results for the first time. The consultant knew from my GPs referral I didn't and it was never mentioned.

    I think like you have replied here, moderation comes through. I doubt I'd have been informed of any diet when I was diagnosed had I not asked.

  • Well, all that is advised is following a healthy diet and drinking no more than 14 units a week, so thats what I'm sticking too :-)

  • Hello once more Debbiem40.

    Go for it. Yes I've always tried to have a healthy diet with certain moderations. You are obviously doing exceptionally well. It is good to read of others on this site who are doing great such-and-such years on from diagnosis.

  • The best advice for now until your appointment is : do contact the PBC foundation, phone them today, and join on line for future information that is correct and upto date. There are sites out there that have very outdated information so be careful what you read.

    I remember speaking to them through tears and fear over 7 years ago, but the relief was tremendous.

  • Please dont panic.for a start this disease is very difficult to stage.

    I was diagnosed when my 4th cjild was a prem baby and like you all i could think about was would i survive to see the grow up!!!

    The youngest is now 17and in second year of college.

    When he was a baby i had a biopsy and was told i was stage 4.... the worst but later realised this was only of certain bits of my liver and as its a really resilient organ this really didnt mean much.

    Blood tests are more accurate but even then mine were pretty bad while i was.pregnant and did calm down a lot after id had him.

    The worst symptoms for me are the itch...was yours actually a rash or just an itch as rashes are unusual for pbc also the tummy is that due to irritable bowel.type sympstoms?

    The fatigue is the other bad ome but again it varies so much from person to person.that you hopefully will only have this mildly?

    Just be kind to yourself enjoy your son and dont drive yourself with unecessary housework.we all know it has to be done but dust will always be there.cut down on what you can any do tjings you enjoy thats what ive learnt.

    Im not saying it wasnt hard for us as we had 4aged 10and down but they survived.

    The eldest are through uni with good jobs one a farm worker which is what he loved andthe youngest in second year of college you see there if life after diagnosis and ive just now got to the point where im going to need a transplant but i did have 4children without realising i had it.

    Lots of people grow old with pbc and die of sometjimg completely unrelated so please remember that.

    Enjoy whatever you can and try not to worry unecessarily.

    Best wishes cazer.

    P.s if you wamt to ask more please feel free.

  • Thanks a lot Cazer:)

  • Also just read your post about eatimg...go back to a normal diet you will do yourself no favours by cutting everything out in fact you will probably feel iller as your are living on empty.

    If you really want to change things...

    Dont drimk alcohol or just a bit littler and a bit more often.have a normal healthyish diet but have some treats it really wont do you amy great harm.

    Large quantities of fat may find make you feel a bit nauseous so probably best avoided but still wont do amy great harm wishes cazer.x

  • Hi N-Sedky,

    I have PBC diagnosed 3 1/2 years ago. If it makes you feel better, I should have been diagnosed 20 years earlier after my gall bladder was removed and I was very sick for 3 months. They eventually found a stone in my bile duct. But no one even suggested I had PBC then.

    It was back a few years ago that I had a fever for 3 weeks and was sent off to a hepertologist who diagnosed PBC.

    I'm on URSOFALK and my LFT are perfect now. This medication doesn't stop it but slows it right down, so you live a normal life. Some adjustments to your diet need to be looked at.

    So please don't stress too much. I'm sure soecialist will tell you the same thing.

    Let me know how you go!


  • Hi DannB, thanks a lot for your reply. Surprisingly I had a stone in my Gallbladder too about 4 years ago & used to have the regular stomach pain/vomiting when the surge is there, all the doctors then suggested I remove my gallbladder which I didn't want at all. But surprisingly a few weeks later all those symptoms disappeared & the stone no longer showed in any MRI or sonars!!! I guess it then fall into the bile ducts which have started the PBC later I guess. Wish I removed my gallbladder then before this happens:(

  • Just saw this ..I also had s stone that disappeared but that was many years after Pbc was diagnosed. Not sure a stone would start PBC so don't wish you had gall bladder removed as that can also cause problems with digestion ! Hang onto it if you can

  • Hello N-Sedky.

    I was diagnosed with PBC back in 2010. I was 46 at the time so my children were grown up.

    I have never thought about any such staging in PBC. I was diagnosed without a liver biopsy (due to symptons, above normal blood work and then it was found I had certain antibodies known as AMAs for short). I am not interested in staging to be honest. I am confident it can be known how we are with PBC with simple scans (saw on TV back in 2010, couple months prior to being diagnosed live on air 2 men having liver scans and it was talked through. It was known one had developed fatty liver, another cirrhosis (he was an alcoholic).

    It is natural in the beginning to have certain emotions, be terrified of the future, what it holds. Moreso with a young child to take care of (I was widowed young, left with 2 young children), you do worry all the time and even moreso I expect if you have been diagnosed with something you are informed you will have for life.

    I started with the itch that was intense, reason I went to see a doctor in early 2010. Itching (or pruritis) is a common sympton of PBC as is fatigue. Neither of these are said to be of any correlation to how a patient really is doing with PBC due to it being very variable. Some itch, others never do and same with fatigue.

    I expect you'll have either started on ursodeoxycholic acid (or urso for short) or about to, this is the medication that is used in PBC and used to help the biliary system better in the hope it slows PBC down.

    Personally although I stumbled across PBC in a library reference book before looking up on the net, I found it best not to think further than how you actually are now. I did read about how PBC can progress but decided long ago to switch off. I decided to deal with things as and when as to me worrying about them could be needless and I'd rather get on with living life. Things that can occur in PBC in a lot of patients never do develop so meanwhile no point in worrying.

    You need more time to start the urso, get used to taking that and then perhaps as I did taking it as it comes for the next 12mths and then once you have a set of blood comparitives from now to on urso if your LFTs (or liver function test) is above the normal range currently) then in a way you start getting a bit bolder as a year passes and then another. I'm 6yrs diagnosed come December and still doing pretty well in my mind (I ask for print-out of the bloods each time to look. I don't get hung up about them these days, I go with how I feel. As far as I know I've not actually developed any further symptons except a case of broken sleep due to itching from around 11p.m. until 5a.m. it does make me tired in the afternoons).

  • Oh Peridot! That must have been really tough on you to be alone in this situation with 2 young children! What a long journey you had. glad you passed all that & reached the peace you have right now. What a brave mom you are:)

  • Hi N-Sedky:

    I agree with all that has been said. Moderation is a good rule of thumb!

    The best thing I did early on was to get copies of all my blood work and test results. The appointments go by very quickly and I found it was helpful to keep track of my progress when I was in a better state of mind after the doctors visit. I keep a file of all my reports (can access online as well). It helps to review before going back for doctors appointments and to help you understand your situation. You will likely have blood work a bit more often in the first few years while on Urso. I found it helpful to be able to track the changes. You are your own best advocate so I encourage you to learn about PBC and ask questions. Also, many, including non specialist doctors, don't know a lot about PBC. You may find your constantly explaining it to people. Again, you will get used to it!

    Best of luck to you. The early days after diagnosis are definitely the hardest. You will find a lot of information and support on this forum. Enjoy your little boy!


  • Hello N-Sedky,

    As you will have gathered from the excellent advice given by other s who have PBC we are all affected differently. I was diagnosed in 2001 and was never told not to drink and never found it necessary to alter my diet. Up to 2014, when I had a liver transplant, I carried on with my work as usual and my social life. I am 70yrs old..

    The main effect of the disease was tiredness and occasional itching which very slowly got worse. I was never told about what stage I was on and I saw a consultant every 6 months. I am now doing fine and doing all the things I did prior to my transplant and still receiving support and regular visits to Kings Hospital to see the liver consultant.

    It is unlikely you will take the same course and will not need a transplant but just to assure you if things ever get to that situation things will be fine. So be assured you will see your little one grow up.

    Best of luck!

  • Thanks a lot allotment:)) thats really kind of you

  • Don't have any massive amount of experience currently going through diagnosis. My son is 18 months I understand your fears, feel them daily but I do know that since May I feel s little better everyday. Ups and downs. It's a scary place to be but you will meet the most lovely people on here. Here if u ever want to talk xx

  • Thanks a lot Chazzy:) I totally understand how you feel, but don't want that to rule me even as my GP told me your anxiety & worry could harm your body even more. Hope you're there till your baby have his own babies:))

  • Woah!!! Hold up there. No one's leaving the planet just yet. You seem very much in the early stages which means that your liver is probably pretty healthy. You'll probably be put on Urso in some forms and maybe calcium tablets too. But that's about it. If you do what your told and try to avoid alcohol then you'll be a Granny before you know it. Every case is different but I wouldn't be writing myself or yourself off just yet. But do tell your doctor you would like to know where you are. I like to know my blood results so I can see them coming down. Best wishes to you and your family

  • Hi,

    Looking at everyone's posts, you have been given some really great advice, I too would say join the PBC foundation as you will not feel so alone in having PBC.

    i was just 31 (but prob had it earlier) when I was diagnosed and my twin boys were just 5 so I totally relate to how you feel.

    I was always told that your body thinks your liver is a foreign object and doesn't belong in your body hence the attack of your bile ducts etc so it's important to stay as healthy as you can, eat well and exercise (running around having kids is plenty of exercise in itself) and look after yourself and your liver.

    For me however, my bloods and routine appts were stable for a long time. I am now on the liver transplant waiting list as my Liver isn't very well. I was never a big drinker in my 20's and have not drank for almost 8 years but I've reached the next stage of my journey with PBC. It's my bilirubin that is the main problem as it is through the roof and making me feel poorly!

    Take your meds, attend your routine appts, you will prob like most of us have regular US liver scans (don't hurt like a pregnancy ultrasound) so your consultant can keep an eye on your liver.

    My best advice is if your not sure then ask doctors to explain in more detail.

    Best thing I used to tell myself when in the early days I would be terrified about having PBC is something the PBC foundation always said to me once and that is....

    "People will die with PBC not because of PBC"

    Stay strong and take care 💞

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