Quality of life

I have been diagnosed with pbc a month now (no symptoms, lfts still normal at this point - diagnosed by AMA and biopsy, stage 0/1)

I am 42 now and am finding it hard to get my head around "losing" my future, as well as not knowing how much good time I have left. I imagined an active retirement with my husband enjoying travel, hiking, skiing etc, which we enjoy.

I've been wondering whether pbc symptoms are severe in everyone - are there any out there who've had pbc for a number of years but who are still able to remain active and not driven crazy by itching? Do you have what you consider a "good" quality of life?

Thanks for helping me adjust...

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36 Replies

  • I'm also 42 and about to have a biopsy to confirm PBC, but strongly suspect that that is what I have. AMA was very high. I don't believe that PBC is incurable though. I have read many stories of serious diseases (including PBC stage 4 liver disease) completely reverse by a raw food diet. So I intend on continuing along that path. So far my itching has diminished completely (no drugs at all) just through diet and my fatigue has pretty much gone. For me, this was simply a warning call that I needed to look very seriously at diet and lifestyle choices and make some changes. So far so good. The medical model is not the only approach you can take. All the best.

  • where did you read about a raw food diet reversing pBC stage 4 liver damage? I am curious because that is something that people have been 'pushing' at me and I am very resistant to it.

  • Actually someone linked to the article on this board. Here it is again...<<http://www.beautifulonraw.com/raw-food-blog/i-was-told-my-liver-disease-was-incurable-i-turned-to-raw-foods-and-saved-my-life/>>

    Here's a link to my blog as well, if you're interested... <<www.realrawnutrition.com>>

    Here's to both of our supreme health!

  • there is nothing that i can see in those links that suggests that liver damage caused by pbc is reversable

  • Did you read this part of the article...

    "After a month of eating this way, amazingly I was feeling better. The itching had gone away, and I wasn’t tired anymore. After a couple of months I went for my doctor appointment to talk about a biopsy and liver transplant. He said I looked so good he wanted to do some blood tests. Those blood tests were almost normal. He told me to keep doing whatever I was doing.

    I am now off of all my medication! Never having heard of a raw food lifestyle in my life before my illness, I now eat about 90% of raw foods. Cooked food is still hurting my stomach. I feel better than I have in a long time. My family and I now live a much healthier and happier lifestyle.

    I just had my last test update. My blood test came back better than normal: absolutely no sign of osteoporosis or arthritis! My spleen has shrunk back down to normal, and the doctor couldn’t find any signs of cirrhosis on my liver."

    You won't find any medical research on diet reversing serious disease because all the studies are either on drug therapy or standard western diet therapy - not raw food therapy.

    But it's up to you - You can choose to believe that it's a dead end road for you, or that you can actually do something about it. Personally I'm taking the latter route. I refuse to believe I can't do anything about it.

    All the best to you.

  • I did say that i believe that eating well would have an impact on how the body responds to illness. What I don't believe is that a raw food diet reverses cirrhosis caused by PBC. I don't accept one person's (unsubstantiated) story about being cured of PBC constitutes proof of anything.

  • That's fine that you don't accept it as proof. You won't find any because there are no clinical trials of healing PBC on a raw food diet. Who would sponsor it? Drug industry wouldn't be interested. It's still a valid story of healing though. One of many I've found. I wish you well on your path to health :)

  • Bit confused because I understood cirrhosis to be irreversible....... Is that not the case now?

  • The medical industry will tell you it's irreversible, according to their research which is all based on drug therapy (a multi-billion dollar industry). But if you look outside the medical system you will find many, many cases of serious disease being reversed with nature cure (natural hygiene - the body's natural self-healing mechanism which kicks in once the right conditions are provided - right food, water, sunlight, rest, emotional poise and many others). Have fun exploring this tucked away realm that the pharmaceutical industry does not want you to know about..

  • her doctor must be able to confirm that she has been cured of PBC / cirrhosis.

  • i should say that i can understand that eating well has an impact on how the body responds to illness but i have never seen any evidence that pbc can be cured / reversed by diet

  • Actually someone linked to the article on this board. Here it is again...<<http://www.beautifulonraw.com/raw-food-blog/i-was-told-my-liver-disease-was-incurable-i-turned-to-raw-foods-and-saved-my-life/>>

    Here's a link to my blog as well, if you're interested... <<www.realrawnutrition.com>>

    Here's to both of our supreme health!

  • Actually someone linked to the article on this board. Here it is again...<<http://www.beautifulonraw.com/raw-food-blog/i-was-told-my-liver-disease-was-incurable-i-turned-to-raw-foods-and-saved-my-life/>>

    Here's a link to my blog as well, if you're interested... <<www.realrawnutrition.com>>

    Here's to both of our supreme health!

  • The blog is empty. ....

  • Whilst I applaud Fruitbat1 for trying alternative therapies, claiming them to be fact is surely dangerous?

  • Morning Kitsilano,

    I understand how overwhelming this can be, I was first diognosed at 24, 9 years have passed nearly 10, and I have remained the same. The past 11 months I have been extremely tired,

    I am finding this hard as I am 33, have a full time stressful job, a 4 year old. My little girl has picked up on this and keeps asking me why I'm tired.

    I know it is hard, and it will take time but try to take 1 day at a time. Remember also that we know more about PBC.

    Take care, xx

  • Some people have PBC and have no symptoms at all. Push it to the back of your mind and carry on enjoying life. Even those with symptoms can stay active, sometimes you just have to change how you approach things. Positive Mental Attitude.

  • That's me..... Completely symptom free, long may it continue. PMA....

  • Hiya I don't know what ama is but I have both PhD and autoimmune hep. Also diagnosed by biopsy. I am now fitter and more active than I have ever been. With medication they can get your liver function under control and most people can lead a relatively normal active life (there is meds for some of the other symptoms). I recommend you join the pbc foundation and read there resources. If you can and they are still running go to one of there workshops. Please don't worry it's not a life sentence.

  • Hi

    I was diagnosed in 2005 and my symptoms have not changed at all. In fact I do not have any symptoms. If am now 63 and still very active and working full time. I have just been refered to a new liver unit and having tests. With any luck they will tell me that I do not have PBC.

    What is it I read "you might not die of PBC but with it"!

    So i think you should have many more good years ahead.

    Keep positive and you should be OK.


  • Professor Neuberger at Bham QE Liver Unit said to me "most people die with PBC, not from it" :) I have never forgotten those words. What a lovely man he is.

  • Hello Kitsilano.

    I was 46 back in 2010 when I started itching and was suffering fatigue at the time. 8mths later (Dec 2010) and I was diagnosed with PBC from the abnormal LFTs, itching and also positive AMAs. (I am in England and if you are symptomatic and an AMA comes up positive for diagnosis of PBC we don't tend to have a biopsy.)

    I have now been diagnosed with PBC for over 3yrs and though I still have the itch at night (fatigue vanished sometime later 2011) I decided prior to diagnosis that I thought I had PBC after stumbling across it months previously that if I had there was nothing I could do about it and made a few decisions then. I was a widowed mother prior to 2008 and finally met up with a man who served in the army overseas (met via writing) and we married May 2009 and within a year of marriage, I started itching. I gave my husband of 18mths the option when I was diagnosed with PBC to leave me. I told him there was no way of knowing how it would eventually turn out and I would go it alone.

    He hadn't taken it very seriously during 2010 and it was only 2mths after diagnose when I went back to the hospital for the first time after starting urso that the consultant informed him that 'it can lead to transplant' as I'd never informed my husband of this. We decided together that we would not waste any time on anything that was not worth it, we'd get out and about as much as we could and live a life.

    In the early days it was not easy as I had a few initial side-effects from the urso but they vanished within a few months. The dropping of the LFTs spurred me on as I've never been one for reaching for any pills. I'd never frequented a doctor up until 2010 and always thought I was in pretty good shape, never seeming to have even a common cold.

    Symptons vary between people with PBC but the commonest are fatigue and itching. I am fortunate that I only at present have itching.

    I don't go in for any stages of PBC, I just try to get on and will deal with things as and when as I cannot see the point in worrying about something that might never be.

    PBC isn't that debilitating if you are pretty active but I expect with fatigue from my brief experience of this during 2010 and part of 2011 it can make you not want to get up and go somewhat without having to drag yourself to do things.

    I've enjoyed camping in the last few years, something I had never done before 2010. I think part of the key to it is to keep on moving as much as possible.

    Another thing is to try to eat even healthier than you thought you did prior to being informed you had PBC. I was never a big alcohol drinker prior to my first abnormal LFTs in 2010 and since I've just not bothered with any. Does not bother me as I never much bothered before.

    I find that some of my family don't take it seriously as they think I pop a pill daily and I'm fine but it can become more complex than that. At present there is no cure for PBC and you just have to live with it. I refuse to let it get the better of me and just get on. If I'd have been informed there was no pill to take to try to halt the progression of it, I think I wouldn't have thought that bit more about it than I have. I am reminded of the PBC every time I reach for a pill and also when I itch at night too. I find for me the most stressful thing is visiting the doctor for the bloods as unfortunately for me it's not been plain sailing there. Results been ok, it's the fact I've had certain bloods missed and also I have had battles to get print-outs of the results so I can see for myself.

    At the moment as you are asymptomatic and your LFTs are normal though you will be monitored for any future changes (you may never have any, some don't and so PBC patients never progress very far either), enjoy your life now. You had the hindsight of finding out at this stage as a lot like me never did until we became symptomatic. It does take a bit of time for it all to sink in but as time goes by as it has for me now, you then realise that you are still here, you are still the same (as in my case as I was from a few months after starting urso exacty the same LFTs wise, abnormal but not badly abnormal) and it's time to get on with living.

    Continue to travel, hike (I love this, do a lot of walking), skiing, etc. There will probably be a few changes with regards to travel insurance and life insurance now as I have found but don't let that stop your enjoyment, there are way round.

  • I was diagnosed 20 years ago. I am 68 now and have few symptoms although sleeplessness and tiredness can be a problem at times. I go to circuit training 3x weekly. Things may be changing now as I have end stage cirhossis! However i don't believe that I won't be around to lookk after my grandchildren. Stay positive, enjoy life and let the future take care of itself!

  • I was 43when diagnosed and never had so much as a cold till then, ,took a while to get my head together but since taking urso and changing diet have been ok . Still have day's when feel tired and get itch but usually that's after doing a couple of really long shifts at work otherwise feel fine x

  • Hi there. It must be about 8 years since I was diagnosed (I'm now 62) and if it weren't for the 6 monthly blood tests which show some elevated readings, I would doubt the diagnosis as my life is pretty much unchanged apart from remembering to take my Urso every night.

    I still enjoy an active life - skiing, badminton, long dog walks and have a great social life involving great food and wine.

    Unlike before diagnosis, when I tended to have wine every evening, the only life-style change I've made is to drink less and less often and as I did last year, I've cut out alcohol for this month and probably next month ahead of skiing in March.

    As is often said on this site 'you're more likely to die with PBC than from it', so take heart and don't let it take over your life. Let it learn to live with you, not you with it.

  • Hi, I was diagnosed in 2008 at the age of 44. I went to the doctor because I started to experience joint pain, bone pain, energy drains, fatigue and cognitive symptoms - getting confused, concentration and short term memory problems. I was found to have normal lft's but very high AMA. Over the years my fatigue has become debilitating at times and my cognitive dysfunction difficult at times. Despite all of that I continue to get out and about whenever I can and I love my life with my husband and two grown up sons. I think it's all about adjusting and managing the symptoms.

  • Hi

    I’ve been diagnosed over 4 years ago. i am now 48 years old. although some days i have a terrible itch, and sometimes i have fatigue, generally I live a very healthy happy life. i really agree with comments that diet is important. i have a very healthy diet , I try not to drink alcohol but also on occasions i like to have a takeaway, eat chocolate and have a glass of wine, ok its bad for you but its all about quality and what makes you happy as well. some days i think about my condition alot other days i forget i have it. but i wont let it rule my life. what will happen will happen. its about what’s happening at this moment. I find that not many people understand the condition and thats the worst its a silent illness, iam afarid that loneliness does come with it, but these sites help to relieve that symptom wish you lots of happiness and good health

  • In life everyone is different and so it is with PBC as can be seen from the varied responses you already have. The only reason I want to add something is my case may give you more hope.... I am 59 yrs (male) diagnosed 12 months ago, some blood readings of 4 years ago that were "lost" and now "found" show similar readings to 12 months ago when I was diagnosed from bloods alone. Unfortunately for me (or possibly I mean fortunately?) I am off to Transplant assessment in 1 week. POINT IS I have had PBC for years and years, what took me to doctor was feeling 90% which I put down to old age!!! Some, and I am one, pass through life with PBC for years and years (possibly 30?) without even knowing it!

    Make the most of life what ever it throws at you and good luck for a full and enjoyable life!! Things could be much much worse :) PCBnPBC

  • Hi Kitsilano

    Everyone's symptoms with PBC seem different. That is the baffling thing. I use this site as we all have PBC and are able to gather support.

    Unfortunately a lot of Doctors are in the dark with this condition and it is difficult at times. I have read here that some people having it for 20 years or so and still going strong and a lot of people that have PBC die at an old age of something completely different so my opinion is that it depends on each and every one of us. I have been diagnosed from high LFT's and did have liver biopsy but with no severe damage so Urso is the drug for me.

    I can say that I am one of the lucky ones (touch wood) that I don't have much itchiness but do have the fatigue. It catches up with me and I do get frustrated but am trying to go with the flow. Everyone on here has there story and I am grateful that we have somewhere that we can talk about it without someone thinking we are putting it all on.

    Go forward with positivity and do as much as you can.

    We are all here for you.

    Wish you well with New Year Blessings.



  • Thank you so much everyone for your kind and thoughtful replies. It's reassuring to know that my life isn't over!! At the moment (since I have no symptoms) the uncertainty is what I am finding the hardest. But it's helpful to have even the hope that I will continue to enjoy my life and do some of the things I love.

  • Hi fruitbat.

    Are you in fact Anthea Frances? That is where the blog reference took me!


  • Everyone is different. I was diagnosed in 2011 (stage 1/2) aged 46 and I am on Urso 1000mg to slow down the progression. I don't have the itch, not everyone does. My quality of life is fine although I do get tired sometimes but just listen to your body and if you need to take a nap, take it, it helps. It's not a death sentence. Stay positive and contact The PBC Foundation in Edinburgh and they will send you information on the condition. They are also a great support as is this site. Take care. Xx

  • Hi Kitsilano I have been diagnosed for 4 yrs I will be 54 this year! I work 4 days a week only just cut down from five ... at first I did dwell on my future and then i thought do you know what I could get run over by a bus tomorrow!! So now I take my urso the only meds I have for Pbc along with other meds for high blood pressure pain injections for crumbling disc in my neck and fusion of lower spine.. I do get tired and do have brain fog I work with a group of people who just make a joke of it !! So my advice is live every day as it's you last look at what you have and not at what might have been contact the pbc foundation and go for it !! Maybe one day your tired then take a rest just listen to your body... As for retirement the government doesn't want us to they keep moving the goal post so how many of us will .... I'm sending you a big hug coz I've been where you are and you will come through it ...:-) Big hugs Karen xxxx

  • Thank you Karen!

  • Hiya, I'm 42 and was diagnosed last week and feel exactly the same way! Feeling very, very low...would love to chat xxxx

  • Hi, I've sent you a direct message xx

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