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PBC Foundation
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Please can someone help

Hello I have also been diagnosed with pbc a year ago im so frightened I keep reading things on the net and one said life expectancy 7 to 15 years im terrified is this true please can anyone help are talk me through it its caused by alcohol and unhealthy eating but iv now changed all this im also diabetic type 1

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Who told you that this is from alcohol and unhealthy eating

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What country are you in. I'm in USA

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Uk have you got pbc

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Yes I do but I like you am newly diagnosed. Other members will be able to give you much better advice and direction than I can. But do you have symptoms

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Only a little itching but it only started last week but in the last year nothing uptill now

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Did you doctor give you a blood test? How did he diagnose you

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Just through a blood test had nothing else done

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Hi ronniedobbie! Please don't panic! I'm also in the UK (Scotland) and I've been diagnosed with PBC after 4 years of elevated liver enzymes and finally liver biopsy this Feb, so I'm still fairly new here and there will be many more others with more experience who will be able to help you better than I can, but I know how it helps to hear at least a few reassuring words - I also felt down and panicky first, but since I've found the amazing PBC Foundation (give them a call, email them!..) and this help group here, I feel so much better, calmer! As people here say - the internet is full of scary information which is clinically brutal, often old and misleading!! And I think the short life expectancy is part of it! Old info! Put your faith in the Brittish Liver Trust and most importantly the PBC Foundation, ask them any questions or ask here in this group, you are not alone and although this illness seems to play with each of us slightly differently, you'll "meet" and hear about so many people who were diagnosed many many years ago and are still going strong! there's hope, always! And medicine and research go forward, I believe that autoimmune diseases are quite popular now in terms of medical research, so who knows, we might be only a few years away from a cure or a way to outsmart this! Take good care of yourself, eat healthy food, avoid alcohol, pace yourself, talk to other PBCers, ask lots of questions, contact PBC Foundation, don't give up on believing that you can still live a long life! I believe we can! We will, OK? Chin up, you can do it Ronnie! πŸ™‚β˜€οΈβ€οΈ

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Thankyou so much I feel loads better now x

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I'm so glad! 😘❀️✨

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I got diagnosed over 12 years ago its not caused by alcohol, mine is very mild so i was told by my liver dr.i do get pain and swelling were the liver is and it sometimes last for a couple of days i cant eat spicy food because of the acid bile i bring up it took me a long time to work out what to eat and not to eat all in all im ok but i try not to think about it thats what i do and it does help.I do hope this helps.

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Thankyou so much x

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Join the PBC foundation honey, they'll help with all your questions. My life expectancy is as with anyone else your are far more likely to die with it than from it & it's definitely not caused by alcohol & unhealthy eating. Although it does help to cut the booze & eat more healthy now you have it. You'll get lots of good help on here, lots of good people, don't panic. Xx

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Thankyou so much x

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ronniedobbie. I was told by Specialists that I would probably die not because of PBC but something else. It takes time to accept this condition and our condition is not because of drinking, just a very rare disease . I do not drink and I eat gluten free diet and am doing better nowadays, but every person is different. All the best.

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Thankyou you have been very helpfull x

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The others have said it really. Not much to add except- If you join the PBC Foundation their Compendium is excellent. You can download it so you can refer to it whenever you like. It's practical and easy to understand. I understand how you feel. I was in your position last year but you are not alone as you will find out if you visit this group often.

Best wishes

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Thanks for your kind wordsx

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Hi ronniedobbie

I think you must be looking at some old information on some old websites. I was diagnosed in 2006 but certainly had it some 10 years prior to diagnosis because PBC at that time was not so well known or diagnosed. I have read that with the medication of ursodeoxycholic acid (URSO) those of us with PBC can hope to achieve a normal life expectancy. Robert from the PBC Foundation can tell you that he knows of a woman who was over 100 who died with PBC not because of it.

PBC is NOT caused by alcohol or poor diet. Alcohol and poor diet may make your symptoms worse and cause other conditions such as fatty liver disease however little or no alcohol and a good balanced diet rich in vegetables and a bit of exercise will help maintain liver health. In fact a well balanced diet may even help your diabetes.

PBC is an autoimmune disease of the bile ducts and as yet there is no known cure, it can only be managed. We are fortunate that a new drug Ocaliva has just been given the clearance by NICE in the UK which is good news for those of us who do not respond to Urso.

If you want to read clear up to date information join the PBC Foundation web site, go to their members section (free to join and can be found through their logo above) where you will find a wealth of information.

I hope this and what others have already written will help to settle your fears. We are a good bunch on here and I hope you will find this site helpful to you.

best wishes

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Thankyou so much I feel loads better x

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Firstly join the PBC foundation, read the site it's full of up to date information, they are based in Scotland the link is at the top of the page.. Their work is recognised by the NHS and it was started by someone with PBC who still works tirelessly for the charity. Then give their helpline a call and ask lots of questions you will feel so much better for doing so. Please don't google outdated information on the internet.

I was diagnosed 7 years ago and Iam doing the same as I was back then, I take the medication and like everyone I have my ups and downs with PBC but I try to keep in mind that: I was told you are living with PBC not dying from it: everyone's PBC journey will be a little different but the best thing you can do is find out the right information.

PBC is thought to be an autoimmune condition it has nothing to do with alcohol or diet.

I gave up alcohol and eat a balanced diet just to help support my liver as do a lot of people on this site I think it also gives us something positive we can do for ourselves to stay as healthy as we can.

Take care .

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Thankyou so much you have made me feel loads better

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I have had this for 20 years are you on urso l drink and eat what I like have you any side affects I don't think it has any to do with drink are you a local girl lots of people meet up and talk about this it does help just put the area you live in someone might contact you hope this helps

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Yes im on hrso I take 1000mg at night thanks for your advice x

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20 plus years and had cardio stress test today and im not going to drop off the perch any time soon. There are lots of horror stories, but that life expectancy is an untreated one. Dont believe what you read. Be guided by your Dr's.

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Hi, don't worry, you are in good company, and as others have said, contact the 'PBC Foundation'. They host this site on 'Health Unlocked': there is a link to their site, at the top of this page & you will find email links and phone numbers. It sounds like your PBC symptoms are mild, and that you are coping well with Urso, so as many have said: it's more likely you'll die in happy old age, & not from PBC!!

It might help - when you talk to the 'PBC F' helpers, if you can tell them what tests the GP did, and did not do. Ask at your GP Reception for exactly what was done and what the results were. They can maybe you a printout of your results - but there may be a charge for this, so ask about this first. [Unfortunately, if the results were a while ago, this could be expensive, so ask first]. If you get no help from the Receptionists, see one of the GPs, and ask for details, and take someone with you*. NB You don't have to see the GP who diagnosed you, especially if he/she is abrupt or short on explanations. Find out if there is a good GP in the practice, who everyone thinks is good. You may have to wait longer for an appointment, but it's worth it.

Whatever is on your blood tests, will make more sense when you talk to the PBC Foundation advisors - Join!! It's free!! and when you get the PBC F's handbook, it has all the info on PBC. Also, you can come back on here and tell us what your results say.

You could also write to, or phone the Liver Consultant you saw at hospital, they may be happy to send you the results they have. If you did not see a liver consultant, then really you should have, but again - talk to the 'PBC F' people.

You should also be having your blood checked every year - the GP should monitor your blood tests, annually (once everything has settled down) just in case the dose of Urso needs changing. Also, the dosage of Urso depends on your weight, so check what you weigh and the PBC Foundation people will be able to check you are on the right dose. Nb After your diagnosis, they should have done the blood tests every few months - after you started the urso - just to make sure you were responding well. If this did not happen, tell the PBC F people so they can advise you, and definitely think of seeing another GP in the practice and/or getting in touch with your consultant.

It is most likely that all of this happened, and that you are being treated perfectly correctly. SO Don't Worry! We are often still in shock when any Dr gives us a diagnosis and we don't take things in properly, so it's always good to take a friend or relative with you - find someone close who can 'learn up' about PBC and maybe go with you, and remember the facts, or the questions that you may forget, if you are feeling stressed.

Finally: try to have fun! Do things you love, enjoy life. PBC is an autoimmune condition (there are lots of them) and they all thrive on worry and stress, so the best thing to keep these illnesses at bay is to live life to the full and enjoy yourself (just avoid alcohol, as the liver doesn't like it!).

take care

Gritty xx

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Thankyou so much you have been great loads of info ill speak soon again thanks you have put my mind a little easier xx

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I've been diagnosed with pbc also. It's caused by your immune system over reacting and attacking the bike ducts in your liver and over time this causes scarring and damage. It's a progressive condition that can be controlled with medication if and when it starts affecting your liver (LFTs in your blood will show this), it has not got a life expectancy as everyone's condition is different. It is not linked in any way shape or form to alcohol or diet. Hope this helps xx

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Thankyou so much you are all great people on here youve all gave me amazing replys and I feel a little better about it now thankyou again xx

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Ronniedobbie, PBC is not alcohol related. Although it will not help the problem all tablets you take have toxins in which affect the liver, which it is so difficult to understand when the consultants keep dishing them out.I was diagnosed 10 years ago. The problem is an autoimmune illness (which attacks the bile ducts) making your antibodies overactive so that they attack your bile ducts which then trickles into your liver. If your liver is undamaged as you will probably know it will repair itself so give up booze and things that are bad for you. Have a look at the PBC website and maybe contact them they are really helpful. Good luck and I hope you have a good consultant as I have just changed mine as he was unhelpful and very condescending

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Thankyou so much I will get intouch with pbc website im glad I have good people like you who I can talk to you are all amazing thanks again oh and they said its a bile duct from my gallbladder to my liver but iv had my gallbladder out that is something else I don't understand x

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Me neither Ronniedobbie that is in deed a mystery, ask your consultant next time you see him. Glad you feel a bit brighter there are some helpful comments on these sights but of course everyone is different keep researching

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Thanks x

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Hi Ronniedobbie ,

I have just been diagnosed with PBC , albeit it was suggested I had it late last year , but only last week I had the results from biopsy and numerous scans , the consultant says I have had this for a long time and went on to ask if i frequently drank alcohol to which my reply is no as I rely too much on pain relief for another problem I have , he then asked if I have ever been exposed to or worked with chemicals to which I can relate to due to being a hair stylist and do use products .

He never once said what my life expectancy is but I have been given ursodeoxycholic acid starting at one 250 mg tablet a day for 4 weeks and if tolerated I up the dose every 4 weeks until I am on 1000mg a day ,

Like yourself I am worried as to the progression of the disease but hopefully the meds slow the process down ,

I find great comfort in this community site as it's full of PBC sufferers who each have their own story to tell and the advice is ten fold , I know it's all too easy to say try not to worry but all said and done anyone who doesn't have this disease really don't know what goes on in our minds .

The hospital are keeping a close eye on me as only this morning I had appointment come for a ct scan on the common bike duct due to being dialated , I know it probably seems to be never ending and with the stress of it all doesn't help but hang on in there , only last week I would just burst into tears for no reason at all , but this week I am feeling a bit more positive ,

So on that note all I can say is I wish you all the best and hope you get reassurance to all your fears and worries , take care x

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Thankyou so much for your loving words im on 1000mg of urso now everyone on here have been great and eased my mind abit ill keep you imformed of anything I get to know thanks for your support very kind x

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Your very welcome . And anytime x

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Ditto

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Look into Functional medicine and healing gut. Autoimmunity is caused by underlying infections( parasites, bacterial, fungal) that cause gut permeability. If you find infection and fix your leaky guts your autoimmunity should stop.

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Hey there, I have been living with PBC for 21 years now and I plan on clocking up a LOT more years before I pop my clogs. This is not caused by anything you have eaten or drunk. It is your immune system that is confused. This is irreversible but totally easy to live with once you come to terms with any limitations it may have on your body. Take your time to listen to your body and adjust accordingly. My advice is to stay off goggle and stick to the PBC foundation website. And stress and worry will only trigger symptoms and make you feel worse. Relax, accept and most of all LIVE x

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Thankyou so much you have made my mind at ease very kind x

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