Just been diagnosed......what happens next ? :(

Hello everyone

I was diagnosed yesterday with PCB. I am 41 years old.My doc has prescribed meds to take twice a day. I have done a bit of reading on the internet but some sites say the meds might not do anything. Is it worth taking? What stages of PCB are there? As I said I was diagnosed yesterday so am naive to it all. I just thought I was anaemic but blood confirmed diagnosis. I dont have any itchiness as yet. What shall I expect over the next few years. Will it affect my life? Will my kids inherit it from me? Sorry if im babbling on, its just a bit of a shocker for me. Thank you in advance for any advice x

19 Replies

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  • Hi Cainster,

    Sorry to hear of your diagnosis. If you don't mind me asking, which two meds. are you on?

    Hopefully, one of them is Ursodiol, as that is the best known treatment for PBC. There is no cure, but the Urso slows the progression of the disease in most people. You may be one of the lucky ones who isn't very affected by the disease. Some people have few symptoms and go on to live pretty normal, long lives. Some people aren't as fortunate and experience a myriad of symptoms as the disease progresses and ultimately end up having a liver transplant. It's impossible to know, at this point, which category you may fall into.

    There are 4 stages of fibrosis and/or duct damage. The only way to determine which stage you are in is through liver biopsy. But, even once your "stage" is determined, it doesn't really give you a clear picture of the future, because some people take 10-15 years to progress from one stage to another, while others may only take 1-2 years.

    I'm sorry to be so vague, but unfortunately, PBC is still fairly rare and doctors don't seem to know a lot about it. The uncertainty of it is one of the things I struggle with most about having been diagnosed with it.

    As far as whether or not you may pass it on to your kids....the answer is "yes". Autoimmune diseases (of which PBC is one) are known to be hereditary. Your kids may not develop PBC specifically, they could develop a completely different autoimmune disease.....or, they may not develop one at all. Let's hope for the later! I worry about my daughter as well.

    I was just diagnosed with AIH & PBC in May....so, I know how you are feeling right now....as does everyone on this forum. So, you are among friends who understand. Feel free to ask questions - everyone is here to support each other.

    Karen

  • With all due respect, according to the PBC Foundations's pertinent and experienced materials, PBC is not hereditary. There is a genetic risk factor invovled, but this does not make PBC a hereditary condition, which would mean that always when the parents have it, the children will have it too. This is NOT the case with PBC.

    I am the daughter of a PBC mother, there are chances that I develop this at some point, BUT, as long as they don't know what triggers it (environmental toxins, infections etc), I think the best I can do is have a healthy lifestyle, love my liver and have a positive attitude.

  • Cristina,

    I hear what you are saying, but what I said was that you "may" pass it on to your kids. Or they may get a completely different autoimmune disease or they may get nothing at all. To my knowledge, stating that a condition is hereditary does not mean that "always" if parents have it, children will. I have a friend with a genetic heart condition. Her mother had it, and she and two of her brothers have it, but the other two brothers don't. Hereditary simply means that because a particular disease or condition is in your bloodline, you may have a genetic propensity for it. That's the way my doctor explained it to me anyway.

    I agree with you about the triggers. As long as you don't encounter whatever your triggers are that "activate" the disease in you specifically (if you where born with the genetic markers), then you won't develop the disease. Of course, we have no way of knowing what any of our triggers are...therein lies the problem. I wish they had a way to figure that out! That would make such a difference in the avoidance and treatment of autoimmune diseases!

    I'm with you.......a healthy lifestyle and a positive attitude is the best approach...whether you have PBC or not.....that's a pretty good way to approach life! :)

  • Just to give an example of the hereditary nature of autoimmune disease.....my Dad has Autoimmune Thyroiditis, one of my brothers has Autoimmune Pancreatitis and I have Psoriasis, Autoimmune Hepatitis and Primary Biliary Cirrhosis. My other brother has not been diagnosed with any autoimmune diseases (lucky guy!)

  • Hi Canister

    First of all have you approached the PBC Foundation for them to send you out some information about the condition. If not do so, you will find the information in the compedium very helpful. You may not think so at first but will eventually. I was diagnosed with PBC 19 months ago following blood test carried out by a rheumatologist as I was presenting with severe joint pains and fatigue. You will like everyone else as I have found on this site... go through a rollercoaster of emotions over the coming weeks and months. I too like you found the diagnosis a very big shock. Can I suggest for the moment do not do too much delving on the internet...try and stick to this site for a little while. The more I delved the more frightened I became and got very depressed and just wanted to cut myself off from everything/one. These initial feelings will get better. I only found this site a month ago and have found it a godsend. Everyone is so helpful and supportive.

    I was prescribed URSO and if that is what you have been given it certainly will help. 6months on from my diagnosis I had an improvement in my bloods, 14 months on they were almost normal. So try and persevere. Only symptom I had when first started taking them was slight diarrhoea when I increased from 1 3 times a day to 2. But that did not last for long and gradually built them up to my 6 a day.

    I am sorry I have to come to an abrupt end with my message as I have to go to work now but will get back to you later. I too have children and know your fear that they may have it too. There are recorded instances of mother and daughter but not sure about mother son etc. Men can have PBC too ratio 9 women to 1 man. Sorry got to go but hope I've helped a little.

  • Great advice! Like you, I researched the Internet CONSTANTLY after being diagnosed and also freaked myself out and ended up depressed and confused. This forum is very helpful and a much "safer" approach to getting the information we are seeking just after we've been diagnosed with something that's a bit rare.

  • Good message thanks. I was diagnosed 6 weeks ago, agree with you, the I Internet scared the life out of me. This site and the PBC foundation brilliant. I take urso 6 a day too...thought I was unusual. Spent 3 weeks in hospital getting tests and have been back for bloods 4 times now and clinic once with next clinic visit 2 weeks. Feel they are looking after me well. My own GP will organise to give me flu vax in autumn etc and has booked me in for bone scan. Not too many symptoms for the moment, had jaundice and anemia but much improved. Had blood transfusion, iron, steroids and on calcium tablet twice day too. I am 44. I want to keep working, enjoying life and stay positive, miss the odd glass of wine but that is all right now.

  • Hello cainster i would recommend you take the urso it is the only drug proven to help people with pbc ,I have been taking it 3yrs now and my bloods are back to normal.please contact the pbc foundation they are a god send to any body newly diagnosed and will answer all your questions dont go reading everything you find on the internet a lot of the information out there can be frightening and alot of it is out dated stick to trusted sights like the foundation,If you are worrid about your children inheriting the disease you can have them tested for the ama antibody to see if they have it even if they do it does mean that they will get pbc.Remember pbc is a very slow progressing disease you are more likely to die with it than of it ,stay positive .xxx

  • Hello Cainster.

    I started with the itch in early 2010 and was diagnosed with PBC Dec 2010.

    In the 8mths it took for diagnosis I did my own bit of looking up (library ref books, internet for eg) and came across PBC. Hoped I hadn't got it as only really had the itch at the time (tho' fatigued, at time put down to working around 48hrs per wk sometimes 6 days per wk) but as time went on and eventually had the AMA test Oct 2010 I somehow thought it might come back as a positive which it did.

    I already knew ursodeoxycholic acid (urso) was the only meds that were given for PBC to apparently slow the progression. I was given urso with these words from the GP (who hadn't a clue really, I seem to know more about what he had said I had at the time than he did!).

    I have to say I am sceptical myself with regards to urso BUT decided tho' I rarely took any prescribed or over-the-counter meds and didn't want to think of being on prescription meds for the rest of my life, I would take and see.

    My initial bloods within 3mths were looking quite good but then after the 6mths mark they started to climb the wrong way again. From Oct 2011 bloods to the ones Feb 2012 there was a definite downer with regards to them as they had started to elevate distinctively.

    BUT for some reason from Feb this yr to the next ones I had done earlier (3mths mark which was May) they had started to got in the right direction again and were as good as the ones I had done at the 6mths mark and 2 slightly better. (I get the readings in print-out from GP. A battle to get every time but I do like to see at a glance and don't get paranoid about them.)

    I've decided there could be times now when the next blood readings aren't as good as the last ones but I also suspect that maybe it could be a case for certain PBC patients that their bloods stick on a certain reading that's not overly-bad and may never reach what is considered a normal reading but could be of no major significance to life longevity.

    I don't care to think about stages of PBC myself regardless of the medical profession going on about staging via liver biopsies as at the end of the day the area where the biopsy is taken might not be the actual overall picture of the complete liver and as we know the liver can function with just a small part being pretty normal.

    It has taken me these 18mths being on urso and trying to accept I have PBC to actually start to really get on with life regardless and just take life as in getting up every day, getting thru it all and hopefully many many years to clock up yet.

    It has affected my life somewhat as I still have nights with the itch but on the whole with a better life management since the diagnose currently I do feel pretty normal.

  • Thanks Peridot. It really is great to read about your experience.

  • It is a shocker when you first find out, mostly because you have never heard of it neither had I . I was around 44 when I found out and told that I had PBC as well as fatty liver. You go through a lot of feeling mostly scared. For me the hardest to deal with is being tired all the time, and people who do not have it can't understand why you can't just rest and be good as new. For me I get through by knowing I am not alone,God is right there with me!

  • Hi, bless you. I was diagnosed with pbc about one month ago, the consultant told me to go and discuss the two meds that you can take with my dr but cannot get an app with them. So I am going back to the consultant and giving up with my own gp as they are useless after tlelling me pbc is nothing to worry about they have not got a clue. I am staying positive my friend are getting me through.

    The foundation is the best way to go,

    Wendy

  • Hello wharrison.

    I switched GPs (Feb 2011) just after diagnose and don't seem to still have one that I'm fully happy with.

    Given up until 2010 I rarely had contact with my original GPs surgery anyway tho' I knew who they were as my children whilst growing up also went there plus there are the usual odd check-ups (womens').

    On registering at this new practice last yr., I had to see one of them for my first repeat of urso as (there are 8 but bear in mind apparently they have 10,000 patients registered there (found out later) and they run 2 practices in the same town so only really work part-time at each)). The one I saw then was pretty good and asked why I wanted a 90 day supply of the tablets as opposed to the norm (60 days) so I told him given I have to pay...... of which he agreed. He went through the blood results when I said I would like a print-out each time and even said he was putting on my records that each blood test I could have print-out, save messing about going back to a GP to request.

    Well I've only been for the med reviews since (every 6mths) and somehow managed to be booked in to see the one I was registered under and have to say I do not somehow gel with him. The first thing he said to me was HE 'couldn't understand' why I want the print-out!

    Altho' he seems to 'know' about PBC I actually don't think he has much of an idea and I got evasion when enquiring as to if there were anymore patients registered there with this condition.

    i have had 2 runarounds since registering getting the print-outs as they have to be requested from a GP!!

    Expect I have the words 'neurotic' or 'paranoid' on my notes now that have probably doubled in size since 2010 due to now having PBC. But at the end of the day I have stopped letting it bother me (until next time I have to go!) as no doctor knows me really.

  • I have just been diagnosed just blogged on the community bit and now my tears back this must be a nightmare with docs for you and really its not needed. My gp and consultant have and were brilliant its been three months from abnormal lfts due to complete wipeout and continued blood tests and lab doing a further test to seeing the consultant with diagnosis. May I suggest you move near me and share mine this makes me sad for you I hope you find a way to get them to just do it with out question.

  • I wish, you could like a comment on here the way you do on Facebook, I feel I need to say something to everyone...so many thanks to you all. I come here every night to touch base, you have no idea how much I appreciate you all and your words of wisdom.

  • Hi Again Cainster,

    Please accept my apologies for misspelling your name tag this morning, combination of tiredness (it was just past 6am after all..) and rushing for work. I hope I did not cause you any offence.

    I see that you have already received some useful advice. Just remember you are not going to get all the answers to all the questions milling around in your head straight away. Be patient and take your time to come to terms with your diagnosis. The registrar who broke the news to me was not very tactfull and upset me to such an extent that I did not think I would be around to see my youngest grow up. My consultant has since put my mind at rest and I now know that having PBC does not necessarily mean doom and gloom.

    As previously stated internet information I initially found was very frightening. I convinced myself I had all the signs and symptoms when infact I did not. I only had the muscle/joint pain and fatigue, the mind is a funny thing and can play tricks on you when you are at your most vulnerable. The sypmtoms/signs are itching, fatigue, dry eyes/mouth, indigestion, joint pain, abdominal pain, diarrhoea, pale stools/dark urine, in more advanced cases jaundice, easy bruising, reddened palms, swelling ankles, swelling abdomen. BUT not everyone gets these symptoms/signs, apparently some do not show any signs at all and may have had it for years until it is picked up through routine blood tests. I sometimes wish mine had not been picked up through blood tests taken to check for rheumatoid arthritus, I could have gone on with my life blissfully ignorant with not a worry in the world not knowing that I had PBC.

    You do not say if you have had your diagnosis confirmed by liver biopsy or just by blood tests. It seems that this can differ from place to place and consultant to consultant. I am from South Wales in UK, and my consultant requested that I had a liver biopsy to confirm mine, which I did. Are you in the UK too? We do have friends allover the world, US, Australia etc.

    If you have not contacted the PBC Foundation yet, you can do by email or even if you go to the top of the page in the Directory you could message PBCRobert direct who is one of the people at the foundation. I emailed when I first contacted them because I could not bring myself to actually speak to anyone. I did not find this forum until a month ago and so wish I had before now because speaking to others through this about their experiences has been such a help to me, you realise you are not alone.

    You have made the first positive step by writing your question here. Do take care of yourself and I wish you all the best

    Cheryl

  • Hello and welcome!!

    Firstly, I have to say that PBC is not classified as a hereditary condition. Whilst it is generally accepted that PBC has a genetic element, along with the other autoimmine conditions, generally what is passed from parent to sibling will be the genetic predisposition.

    We do not know the percentage of parents who pass this genetic disposition to their siblings.

    We also do not know the percentage of siblings passed on the genetic predisposition who actually develop PBC.

    Whilst we support this site, and Heath Unlocked as a forum, it is not necessarily the place to get accurate information.

    The opinion that the only way to stage your cirrhosis is by biopsy is not just wrong: it's spectacularly wrong. Biopsy as a tool for staging has been outdated for years. Even then, PBC itself is not staged, merely the damage within the liver.

    The best tools to measure that these days are scans.

    There are 3 aspects to PBC: cell change within the liver, liver function, and symptoms. These three do not corellate and therefore all need to be monitored seperately.

    I reiterate in the strongest terms that *the* place to get accurate information is the PBC Foundation.

    All that said, you will find nuggets of information on here. Just remember that personal opinion is just that. In time, you will get to know the personal opinions that have more knowledge attached to them.

  • Welcome Cainster, I'm quite new to this group, but you will get a wealth of imformation from all of them. They will answer questions and suggest all they can to help with symptoms and thier procession of this disease. I know it can continue for years and years, for I'm found in old labs of mine, that I had elevations, of the liver as far back as 87 and 93. I wasn't diagnosed until 2003.

    Wishing you well, Magnolia

  • I am in same place as you, just diagnosed and have similar questions. A little scared and a little bewildered at the moment.

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