how long can u live or have have had pbc for???

Sorry trying to get as much information on pbs while my second test comes in, My Question is

1.)how long have you had it for?

2.) did u go to the doctors because u felt unwell or was it my random that u found out from another illness.

3.) how long can you blood tests come back normal?? what does that me, if anything.

4)why do i hear about this 10 year death thing, everyone says it is untrue, my Question is why is it everywhere i read.

5.) i saw that the stages can last years.. when they say years what does this mean??

6.) i am 30 and worried sick as i have a little girl to look after and am looking for these answers... is there any chance i will make old age or am i kidding myself.

some please on here have been very helpful, but if u can answer these Question it would help me a lot...

i am not sleep or eating well at the mo from worries, i guess u all have been here.

regards k. x

47 Replies

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  • hi melbourne..... im sue .... i have been diaignosed with pbc,fibro, and diabetes type 2 for 9 yrs, but i know i had pbc for at least 3yrs before that ,i think the 10yr thing only means that some people go on to the transplant list after 10yrs..but that depends on your bloods and how well you look after yourself...... as long as you try to eat well , low fat is best and not a lot of booze.... i also take milk thistle everyday as i believe it helps the liver ..some dont !!! i am still at stage 2....... you can live a long long time with pbc just look after you ok ..:) x

  • Nash1

    And Melbourne

    I have had pbc for 14 years on two 250 mgs Urso morning and night plus two vit D and calchew ,my liver is ver cirrosed, when I had my gallbladder out in June this year's hey did key hole all went well till tea time. I then started to bleed out through all the keyhole holes. I was moved to HDU I became very anemic had to have 4 units of blood, I felt I couldnt breath I felt I was drifting away pain was bad they couldn't get more lines in but I got worse theatre again at 11 pm they put it into my neck had tubes everywhere two surgeons opened me up cleaned out all the clots gave me medication to stop the liver bleeding so they told me, and my daughter. But by 5.30 am my daughter was called and told I was going back to theatre and that I was extremely poorly , my daughter phoned her dad as he's disabled to tell him it was touch and go. Liver was still bleeding more blood given. They left me ventilated and I went to ITC unit I had 12 units blood and other blood products, when they woke me up I was put to a surgical ward but never any talk of liver transplant. The itching drives me mad. I use E45 on arms legs and ice cube helps numb the bad areas. It works for me. The bone pain is dreadful down my legs and arms hands no that's why I got my pension early. I have bloods done monthly as I have Nash small Varacies and a hernia I've started to get liver pains and upper stomach pain threw to my back. It's endless but I'm here 58 in Jan , but there are other people who are worse than me and no homes due to this awful flooding, sorry to have board you all , healthy happy new year to you all , x

  • hi melbourn.im newly diagnosed and at first frantically trying to find things out.try to relax some people NEVER progress on from finding out they have pbc.it is a slow disease and if you read this site youl see people have it for decades.even if it progresses its not a death sentence especially at your age.ive had slightly high bloods for almost 8 years and dont really have any symptoms.wouldnt have found out if i hadnt been going for my annual mot.send for the pbc foundation book itl put your mind at rest.if it turns out you do have it youre not alone.hang in there were all with you.xxx

  • hi thank you for your answer, i have had some great feed back on here, i notice u say some people never progress on from finding they have pbc.. is this really true???

  • I was diagnosed with PBC Sept 2012. I am 60 years old. My liver enzymes were elevated so my Doctor ran more tests and my AMA was elevated. My alkaline phosphate levels were elevated in my 20s. My liver enzymes would then return to normal. I think I may have had this disease for along time.. My liver scan in March was normal. My liver specialist told me that I have had PBC for awhile and this isn't something that just started. I'm not sick, and I have no problems with fatigue. My Aunt was 80 and she was diagnosed with auto immune cirrhosis. This was in 2003. At the time I paid no attention to it. But she had to have PBC. She did not pass away from PBC. It is a slow process to get to the cirrhosis stage and it may never cause problems. The Ursodiol is supposed to retard the auto immune response in the liver. Someday there may be a cure or new medications to treat PBC. I try not to read too much on the Internet because there is a lot of misinformation. Take care and I wish you all if the best!

  • If you keep reading you will see that if the PBC is in stage 1 there is no difference between the life expectancy of those with PBC and the normal population if treated with the Ursofalk (acid). There have also been cases where the fibrosis has been reduced. I read about this as I am being treated with methotrexate and a guy called Kaplan observed this with his patients. There are of course the doom and gloom figures as well such as rapidly increasing bilirubin is a sign of progression etc etc which freaked me out as mine was high and increasing until I began methotrexate BUT you have to try and stop focussing on the life expectancy and look at your own case closely as everyone is very different. Can you speak to your gastro and write down a whole heap of questions you want answered about your case. This may put your mind at ease. I totally understand you fears as you have a daughter. I have a 12 year old son and that was my biggest worry - he still needs me I thought and how will my husband cope if I am not around. Those thoughts are normal but let's face it, anything can happen in life - some far worse than this. Also the worst thing that can possibly happen as well is liver transplant but that day may never come. Also when you read things check the date of the papers/info as some of them are from 1988 so are not the most up to date info. Hope this helps.

    Skippy

  • Hi honey, I am Judi welcome to the best place for information and supoort. I am 67 and was diagnosed a year ago. I have no symptoms. I take really good care of myself. i also take milk thistle and urso. I eat a very healthy diet. Small meals, low fat , but make sure you get good fat ie: Salmon, olive oil, walnuts, pistachio nuts, avocado. I dropped 25 lbs, so I am now at a healthier weight. A common comment found here, you will more likely die with PBC than from PBC. i have communicated with women on here who have had PBC for more than 20 years. That gives me hope and so it should you.

    I know it is difficult for you, but you really need to take a positive approach to managing this condition. Find comfort in learning from a great bunch of people and find a Doctor you connect with at a level of mutual respect. The Foundation is the best source of information. When your mind starts wandering to dark places, find a way to stop and think about the long, happy and healthy life you will have with your family. Thoughts become our reality, so choose your thoughts carefully and make them good ones. Best regards, Judi in the USA

  • thanks for your reply, i am still worried tho, i understand that people look on the bright side of it, but i can not help but think 20 year living with it isn't long at all.. meaning i will only be 50 by that age and then what... don't seem to hear of people living with it all there lifes, or is this not true. if i was older i think i wouldn't be as worried as i am now being only 30. just can't get out my mind not seeing my little girl grow up.. fell sick about it.

  • Hi, I'm newly diagnosed too and I have seen and read several items about life expectancy, I also read of an old lady who died at 103 she was diagnosed many years before but passed away due to her age related illness other that PBC. I'm still coming to terms with it myself. I'm 57 have my children and grandchildren and really don't want to be checking out to soon so I will be doing what I'm told and hopefully the tablets will do there stuff and if when it gets bad I will get a new liver. Try and stay positive.xx

  • Hi, I'm 32 & have been diagnosed with Pbc for 2 years, aih for 4 months. It's really daunting but not as bad as its sounds. Once you get all your meds sorted out you'll feel much better I'm sure. I didn't have to take any meds for 2 years but after a recent bout of jaundice & sickness & a couple of week stay in hospital I'm now on steroids, aza & calcium tablets. I see my consultant weekly & have weekly bloods done to monitor me. If you've got a good consultant then you'll do just fine & hopefully they will reassure you & put your mind at rest. I have a son who knows my liver doesn't work but I just reassure him I'm ok. This site is really helpful & everyone's diagnosis is totally different, good luck & keep going you'll get through it! Katy xx

  • Hi 32, so u found out the same age as me now??? or did u have it before.. can i ask how u found out was it by random??? you saying u have had it two years and already have jaundice has scared me more. thank u for your reply tho

  • thank u for all the information, i am still really scared...i still don't know what it means to have a normal blood test would i be in any stage???

  • also can u have a positive ama and m2 and not have it??? no one can really answer it. i also have lyme disease

    so this has come at the wrong time.

  • Melbourne,

    I realize that I found an old thread here, but if you get this note, I would be curious how you are doing and if the lyme disease was theorized to have any relationship to PBC. I am a 48 year old man who is basically exactly where you were when this thread was active: positive AMA, fairly normal LFT's except for an AST in the 40's. I am awaiting a biopsy now. But I had Lyme disease twice, and still get occasional 'flareups' of the joint inflammation. I suspect a link between lyme as an activating agent for our PBC might be possible. I hope you are well.

  • As Healthangel suggested, do join the Foundation - pbcfoundation.org.uk or email info@pbcfoundation.org.uk and get the facts. PBC is different in everyone and effects them in different ways. I follow my consultants advice and live a normal life. I am 73 and have known I have PBC for 13 years but probably had it longer as I refused as a blood donor in my 30`s.

  • Hi sorry if I've scared you! I found out by a routine blood test, I was having tests for something else, my consultant doesn't talk about stages he just tells me it's a slow progression that I'm managing on medication. The jaundice was the start of another disease auto immune hepatitis which is linked to the liver but not everyone gets the 2 cross over deseases, once I'd started the medication my liver function tests have gone from 1500 to 60 which is quite normal now I think? Have you got good communication with your consultant? I have to write all my questions down because I forget to ask else! Hope that helps? Katy xx

  • Dear melbourne,

    Please dont panic I was the same age as you. I found out when i was 30 and my little girl was 3 years old and my son was 7 years old. I panicked and had all sorts of horrible thoughts. If only I knew then what I know now. I am 41 and never been so healthy, other than the bloods results and bit of tiredness (but all my friends are tired too, its an age thing or simply running round after a family).

    Focus on treating your body as a temple, eat well, don't drink, don't smoke. Look at this as an opportunity to make a few changes, changes that we should do with or without PBC. I take Urso and milk thistle and my bloods are at the lowest they have ever been, of course check with your doctor before taking any meds.

    Take care

    Linda

    xxx

  • thanks for your message.. ... just in shock i guess, i am 30..this is crazy.. can i ask was u in any stage at 30 or was it not a normal blood test. u sound like u have it altogether, i hope to be like u...i don't have a doctor yet so can't ask questions. r u still scared of it???? i know everyone is different.

  • You're welcome, you will get so much info on this site, knowledge is power:-) Best place for information is this site or PBC foundation website. Don't read too much outside this site as there is stuff out there that is incorrect and scares the life out of you. If you Google the common cold it sounds a lot worse than it is.

    You will go through stages of different emotions. I have been through all the emotions Fear,denial, anger but I'm not really scared anymore, just focused conscious that i have to look after myself.

    I am not sure what stage I was when diagnosed I was only aware that something was not right as I had circulation problems which was Raynauds, I was itchy and tired. My GP gave me tablets for the Raynauds and I told him I took them and they did not work (I did not take them as I am rubbish at remembering). He sent me for blood tests and they came back ama positive

    My bloods have improved over the years. This I believe is down to medication & diet (been on meds a few years now). I dont think I have ever been staged, is it something they do in the UK? I think the thing with staging is you can change up or down (might be wrong on this). My bloods were in the 600's at one point and now they have dropped to 50's.

    Its good you are having tests they were a bit unsure with me at first, it was so long ago I cant remember the detail. As mentioned above write a list of questions for when you see a doctor it helps so much

    Take care

    Linda

    xxx

  • I have had pbc for 10 years they found this in a blood test.there is lots of people with this condition, I was told you can live for years I have sent on amazon for the liver cleansing diet and the healhy liver & bowl book also on line for Dr Sandra cabot you can speak to her if you wish. I am sure you will feel better after you do this everyone who gets this have different side affects I have a dry mouth this has only come on recently but I chew gum sugar free this helps me and drink plenty of water hope this helps you.Grace

  • I forgot to tell you I have 6 monthly check ups and mri scan and blood test if there was a problem they would send for you I think we all think the worse and panic but if you are being treated right im sure you will be ok hope this helps you to stop worrying and try to live a normal Grace

  • thank u for all your reply's, i wish i could get over the fear... i was always laid back person but this has just sent we to worry land. did anyone have normal liver test reults??? they have sent for another ama test not sure why they wouldn't tell me. they just sent me a letter saying a lot of if's or maybe's. i thought if u have a positive then u have pbc?? anyone know anything about this. thank u again to all of u for your help, as i am getting no where with the doctors and still waiting on this other blood test.

  • I live in Suffolk and my specialist is at addenbrooks hospital he always ask me how I feel and always tells me the results are ok grace

  • Hi Melbourne I was diagnosed with pbc when I was 22 I am now 49 an I can say its not the death sentence I have 3 sons who at the time were only 2 3 4 yrs old my boys are now grown men and i have grandchildren , yes pbc has effected my life but more the itch the fatigue an sometimes I have had days were I was so tired I think I could sleep round the clock but my sons have not suffered they have seen me at my good days bad days and we all learned from it don't panic live your life as normal that's how I dealt with it at the time I was young an scared as I had very young kids but I believe if you get as much info as you can speak to your docs then its not as scary as some people predict , I have made changes to my life accordingly when I have to but in general I live my life as normal as possible enjoy your life do what you have to do and don't let pbc control you , you control it its scary at 1st as there is so much information to take in but take your time you will get there .

    wishing you all the best x

  • I just saw on the Today Show" that stem cells are being used to grow liver tissue. Organ transplant tissues created from stem cells have been seen as a medical possibility for decades. An experiment with human liver stem cells points to one promising path to this kind of medicine. It is in its earliest stage and may be available in 10 years! "

  • I have had pbc for 26 years, a lot of that time i have had no symptoms at all.Sometimes I will get the itch and tiredness and then it will pass.Sometimes I get bad blood tests and then they clear up again.There are no hard and fast rules.

    Incidentally the first consultant I saw told me I would need a transplant after 10 years,Well he's retired and Im still on my own liver!

  • thanks for your help, you have cheered me up a bit...transplant after 10, was this something they use to say in the 80's. i hear this a lot and now people say the 10 year thing is not true, is this because they found new drugs or more information now about it. so happy for you that u still have your own liver, just goes to show how wrong they can be.

  • I too was very confused with some timelines for progression of the disease. I have read a lot of studies in the last 3 or 4 weeks and more recently things do look much more optimistic. One of the reasons for earlier predictions was that PBC was usually only picked up at very late stages when serious symptoms occurred whereas now it is detected much earlier often even without symptoms on routine blood tests. The other big difference is the use of ursofalk which for most slows the disease process. Even though this medication has been in use for several years, I think perhaps it will take several more - because of the slow nature of the condition - to truly reflect the long term effects of taking it. And as my Dr pointed out there is always lots of research underway to find more effective medication and to try to grow liver tissue that may be able to be transplanted in the future.

  • Hi puddles, u seem to know a lot about it, maybe from reading and from your doctor and yes living with pbc... can u go in to remission??? or can u always have a normal lft and not get ill??? just seeing if u may know anything about this as i am now to scared to look on the net as the information is a little much to take in,x

  • Melbourne, I have only been diagnosed for just over a month, but I have a healthcare background and have read a lot about PBC. I don't know the answer to if you can be AMA positive and not progress at all, sorry I know that is what you really want to know. And I am not sure that remission as such occurs once you are diagnosed but it can be slowed down by medication. Again I haven't had much time living with the idea of having this disease, but figure I feel well, have no symptoms at this point and may not have for another 10 or 15 years. So I plan to look after myself, enjoy time with my family and if something changes then try to deal with it then. I have 2 young kids and felt just as scared as you, it takes some time to come to terms with. Take care xx

  • thanks for your help, one last question did u find out from having a ama or was your liver test not normal. sorry to ask

  • I found out by accident, I have had some other antibody issues and was having a routine check done, there was a comment on that blood test that they detected AMA. From there I was sent to see a gastroenterologist. A couple of my liver function tests are very slightly out of range (but not ALP which is typical of PBC). They have been for a couple of years but my GP was not worried about it. I also had an immunoglobulin test done by the specialist that was slightly elevated and this is apparently common in PBC. My specialist was certain it was PBC before the biopsy was done. Happy to answer anything I can, but certainly not an expert, just learning :-) How long till you see your doc again? Is it a gastroenterologist you are seeing?

  • i am waiting on my second ama test as my first one was positive, not sure why they wanted a other one. all my liver test are normal. never been high or out of place. they said maybe as they are not sure. i have lyme so they were testing me for all sorts and this come up... do u know why they say it may or maynot be...i thought if u are ama then u have pbc.

  • AMA does usually indicate PBC, but your doctor must have some reason to question this - maybe because you have no signs or symptoms at all. Write down all your questions to ask when you go get your results - I filled an A4 sheet when I went to see my specialist!

  • cheers puddles, u have been a great help, it all the waiting around i hate. do they check you liver all the time

  • No worries. I have to go back for LFTs after 3 months on Ursofalk, and then I think it may go to 6 monthly blood tests depending on results. My Dr said I would have an ultrasound each year and a fibroscan which measures the stiffness of the liver.

  • I have to go back in three month as I am on ursofalk Capsules.

  • Hi Melbourne,

    I was diagnosed nearly 10 years ago when I was 38 with 4 children. You seem very concerned that your AMA result is being repeated, is that right ? Doctors nearly always repeat blood tests if they suspect an anomaly and in your case because your LFTS are within normal range, I assume your Dr wants to ensure that your initial AMA result is correct. Hold on and try and relax. If your LFTS are all normal, then you are in a very good place to be diagnosed. By that I mean it is probably early on and if you do have PBC, the sooner you start Ursofalk, the better.

    Best of luck and best wishes.

    Karaliz

  • cheers, i am a little concerned.. i just can't find any information about a flase ama... so why do the test??? it is the waiting around, the not knowing, if i didn't have lyme i would have never known i may have pbc... as all my liver test are normal.. this week as been hell

    thanks for you message tho

  • No worries,

    I understand your anxiety.

    I just meant it is common for doctors to repeat blood tests to make sure nothing has gone awry during the testing process.

    In the 10 years since diagnosis, I have often had blood tests repeated, particularly when my consultant is puzzled by an unexpected outcome.

    Good luck.

  • Hi Melbourne, I agree w/suemac1. I am almost 55 and was diagnosed 18 yrs ago. I was a single mom with 6 kids 11-20 and a granddaughter! I was just as scared as you, I thought I was going to die in a week! and my doctor said I would need a transplant in 10-20 years. After I got on the medicine (actigall but then it switched to ursodial), and got the terrible itching under control......I kept my prayers going and little by little I was fine, just had blood tests every 6-8 wks and then less frequent until I was once a year, this went on for about 15 yrs. I hadn't been feeling right but wasn't sure what it was. My ankles were swelling alot, I went to the doctors for a span of 3months prior. The hematologist I saw was awesome. He ruled out sooo much, and said the swelling and other pains etc, probably had to do with my PBC. They did ultrasounds and saw the spleen and liver enlarged and fluid around the liver, which is called ascites, same thing in my ankles. Two years ago I was admitted to the hosp for internal bleeding which I recognized myself. I was bleeding from the veins in the esophagus and had to have surgery. Again, very scared and thought I was going to die(I never get sick and was never put under when I had my kids). I was in the hosp 4days and came home. They added water pills to my meds. I had about 10 lbs of fluid in me from the PBC. I take the water pills everyday. I was to go in for a check(scope) 6months after the hosp and it happened again. My primary doctor caught it this time because I wasn't feeling right and she had me come in for a blood draw. My red and white counts were really off. Back to the hospital for the same thing, only 3days this time. Each time I had to have blood transfusion 2 pints. Since the last time in the hospital I have gone for scopes every six months, the first time 1 or 2 'bands' and none the past two times. I have been to the University of Washington to see the transplant specialist doctors three times now. Just went yesterday, my PBC is progressing, but for now slowly, I have always been tired and fatigued but I always thought it was from raising six kids alone and working two jobs for 15 yrs, glad they are grown now:) I also have 9 grandchildren! I remarried 8yrs ago, but my husband and I were dating when I was diagnosed so he has been around. I get really tired easy, I never sleep more than two hours, my muscles are atrophying(sp) and all the little things that come with cirrhosis. But I try to watch what I eat, which I have always been good about, I walk and do some strength stuff at home because they want your muscles and strength good if you ever have surgery, not just skin and bones. I try to nap and I pray and thank God that I get to enjoy everything He has given me, especially the last 18years and probably more, my doc thinks I actually had PBC about 3-5 years before I was diagnosed. There will be good and bad so looking back I would say take a deep breath, say a prayer, if you need a good cry.....do it and get it out, then enjoy your life and all that is waiting for you.......mostly those little ones. thoughts and prayers for you, cyndy

  • I was being treated for arthritis, asthma, depression, fibromyalgia, hiatus hernia, insomnia, migraine, Raynauds, sciatica + scleroderma. I went to a review with my rheumatologist and they did bloods as per usual. A week or so later I got aletter to go back to my Rheumatologist and she told me I had PBC. That was six yrs ago. It is at stage 2 but my Gastroenterologist + my Rheumatologist told me that I had PBC explained all about it. She told me it would lead to liver failure but that could be 20yrs away. Tbh I haven't really worried about it as I have so many other illness. Its just there but I deal with it the way I do everything else, one day at a time. :-). Wishing you all the best, regards, M

  • did u just have ama or was your lft not normal???

  • I am male 66yrs.old and was diagnosed with PBC in 2001. I went to the doctor at that time because I was tired and itched. I had the disease confirmed with a biopsy in 2002. Since then I have slowly become more tired and adjusted my life accordingly. How long before my visit to my doctor I had the disease is unknown.

    So the development of PBC has been a slow process. I am aware the process can be different from one person to another.

    I am now at the cirrhosis stage and suffer greatly from tiredness. From my experience Melbourne you have a very long time before you get to where I am, It's easy for me to say but relax a bit and try to adjust your life according to how you feel. At worse you have a long way to go.

  • thank u for your message, are u getting a transplant?? if so i do wish u all the best.

  • Hi. I'm 59 and was diagnosed with pbc (non-alcoholic) in 1996 - 17 years ago. My pcp found my elevated liver enzymes through a regular physical. I was put on the transplant list through the Mayo clinic in 2008 and am still not ready for a cadaver transplant. I'm looking for a living donor, but so far 3 people have tested & none matched. My MELD score fluctuates between 14 -19 & I am ready! Good luck to you and to us all!

  • Hi, I was diagnosed with PBC in January 2011. I had a TX in June 2013. Apparently I had the disease for years but never knew it, I have read of someone having PBC for 19 years. I am sure you will be OK, just think positive..

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