PBC, AIH, Cirrhosis help !!!

hi everyone, i have just joined up in the hope others can share some help..

18 months ago some abnormal blood results for something completely unrelated started me on a journey that has become quite scary !

after some repeated bloods and eventually a visit to the hospital i was informed that i had Primary Billary Cirrhosis. i was hugely relieved to hear from the doctor that it "probably" wasn't too serious as i was young, healthy and is "just something to keep an eye on" and "shouldn't" effect my life especially for the next 20 years, the liver is very robust etc etc etc. i took great comfort knowing that if the doctors were happy then i was happy and i was prescribed Ursodeoxycholic Acid and put on 6 monthly review with no real restrictions, because of the job i do i very rarely drank alcohol so was told that as long as i didn't drink to excess everyday we would just see how things go.

the next doctors review - Urso needs to be increased but nothing to worry about - all good ! i was suffering with fatigue a bit, a little itchy but nothing major

6 months later - Urso not bringing levels down to the docs expectations so will request more bloods and liver biopsy - my symptoms still were about the same although i was getting a little worried now how this would effect my ability to look after my family. and i will now be put on 3 month reviews :(

3 weeks later - liver biopsy time -...... "that hurt" !!!

appointment through for next consultant meeting.... 4 months time...... i have NO patients between appointments, they seem so far away :)

ok so 2 weeks or so later i get a letter through the post i wasn't expecting...... liver biopsy results....... oh dear...... as i started to read it i must admit i was expecting the same sort of things i had heard from the doctors on previous visits........ PBC confirmed, no major damage and just keep an eye on things, something like that..... but unfortunately as i read on the letter became very scary..... maybe i was just being naive and or not asking the right questions at the doctors meetings i don't know.... but anyway the results were: - Primary Billary Cirrhosis confirmed WITH Autoimmune Hepatitis and the biopsy shows established Cirrhosis :(

i have been put on Prednisolone, Urso and Adcal D3. this has now thrown everything into the air, my job, caring for my family and i no longer have any motivation to get up and do anything, normal daily tasks are really getting difficult to do, i constantly ache all over, my sleep is seriously messed up and i am having to grab a few hours here and there when i can. there are a million questions floating around my head along with huge amount of worry and i still have 2 months left until i get to go back to the hospital to see the doc to talk all this over because they want to see what my reaction will be to the drugs they have just put me on :(

hopefully some of you kind people can share some advice and support which will hopefully mean that it isnt all doom and gloom. thank you all for reading this and i look forward to hearing from you.

26 Replies

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  • Hi Paul. If you are on Facebook there is a good support group for people diagnosed with AIH including those with PBC crossover. It's at facebook.com/groups/AIHorgUK/

    Lots of very knowledgeable people there who can help answer all those questions spinning around in your head, questions about diagnosis, prognosis, medications, work/life balance, insurance etc etc.

    Do join. It should help.

  • Hi Bolly,

    Thank you for your reply it is much appreciated, i will take a look.

    take care

  • In the meantime..... Prednisolone (what dose are you on) messes with your sleep. Once you get down to 10mg or lower that should improve. It also gives you a false sense of energy, thats the extra cortisol, but along with that goes a contradictory feeling of exhaustion.

    PBC/AIH, cirrhosis, any kind of liver damage causes fatigue. The liver does about 500 different things for us, including converting carbs/glucose into energy. So if your liver is not functioning 100% plus you have inflammation going on from the AIH etc, you will feel crap.

    I've not taken Urso as I don't have PBC (I have AIH on top of viral Hep plus cirrhosis plus past liver cancer, so I sympathise with the symptoms and the shock of diagnosis when it comes out of the blue).

    If you are on Aza then your white cell count should be checked regularly, ask your GP to do monthly Liver Function bloods and monthly Full Blood Count in between clinic visiits. Get copies of the results, so you can see for yourself how you are doing, don't rely on a GP receptionist telling you your results are fine, they most likely won't be but may be not be bad enough for the GP to "action".

    To help your overall health and wellbeing, try to cut out sugar, salt, processed food and eat a balanced diet of protein, fruit, veg etc. Once you start looking at packets and tins you realise how much sugar, salt and additives are in our daily food.

    Even though it feels the last thing we want to do, fresh air and gentle exercise can help. Can you discuss your diagnosis with work, Occupational Health departments should have the knowledge to at least look at adjusting hours or tasks to make it possible for you to keep going without making yourself sicker.

  • Thank you Bolly, i am on 30mg a day prednisolone reducing to 20mg a day for the at least the next 3 months and depending on the next visit with the hospital the dose will be adjusted or not. i can absolutely agree with the sleep and exhaustion effects it is very confusing and just compounds the crap feeling.

    sorry to see your liver problems, i certainly hope you are keeping well? how have you found these have effected you?

    i am not on Aza and am not sure what that is but from what i have read and discussed with my GP depending on the outcome of the multi-team meeting my consultant is having at the hospital there may be other drugs in store for me, we just dont know yet. i stupidly didnt keep any results from my previous hospital visits because i was naively thinking it would all be ok but i will be sure to keep them from now on !

    thank you for the advice on food, i try to eat as balanced as possible but i agree there is ALOT that we just dont take any notice of or even know is there.

    work is a bit of sad point for me because i absolutely love my job and work extremely hard, at the moment i am just about managing by making subtle changes myself but i am worried that once these changes are no longer effective i will no longer be able to do the job i love but i am obviously thinking long and hard how to approach it, i guess i am sort of hoping the drugs will be able to control alot of it? that statement could just show that i dont know what im talking about lol

    can alot of physical work activity have a negative effect and make me sicker? my job is extremely physical and the gym is taking a serious knocking at the moment considering i used to be in the gym 4 to 5 days a week i can no longer handle it and if i do try it really hits me for 6 and i pay for it for days !

  • Oops, forget the Azathioprine bit, didn't check back to your original post about meds. It's the most common immunosuppressant drug for AIH, but ignore that for now.

    30mg and 20mg are high(ish) doses of steroids. Prednisolone is an artificial cortisol, and as a gym user you will know what adrenaline does to your body. You are living with a 24/7 adrenaline overload at the moment. It will make you buzzy and shaky and twitchy a d thinking you can lift weights till you burst.... But you can't, it's all a fake! And to cap it all your adrenal glands shut down as they twig there is plenty of cortisol in the system without them making any. So when your docs say you are ready to wean off the steroids, do it real slow. I took 6 months to come off 40 mg, mg by mg week by week, really slowly.

    I would cut back on the gym, as doing gym work while on 30mg might be pushing your heart rate and BP up too much. Especially if you are already knackered by work.. There are people on the FB page with physical,and active jobs, we have an airline pilot, a high powered business woman with kids as well as the ft job, people with their own businesses, people who cycle and run marathons, but they don't get to this stage until they have stabilised their liver functions and got used to the correct balance of meds. Don't run yet, you need to take baby steps til you feel you are coping again.

    Some people make a career change, or go part time, or work from home.

    As Ralph says, stress and anxiety can make you feel worse. If you have a sympathetic GP, get them on board, they should not alter or change your meds without your consultant say so, but it helps to have them in the loop offering support and advice between clinic visits.

  • Thank you Bolly,

    i have been feeling very shacky and i tried to find out from my GP how exactly the drug was going to effect me because of work, children and caring for family members so that i could try and plan how things were going to go but unfortunately i wasnt aware of half the things that was going to happen... it is quite scary how much it does !

    i am stubbornly coming to realise the gym and alot of things will have to be slowed down until i figure all of this out and yes my GP is great so i may have to start visiting him a bit more often lol

  • Plans. Those go by the wayside a bit with this sort of diagnosis. You learn to take it day by day, enjoy the good ones, endure the bad, pace yourself, bite your lip when people say "you DO look well" when you feel like death warmed up and lie through your teeth to well meaning enquiries about "how are you" from anybody unless they genuinely will understand when you tell them the truth. 😉

    Nobody knows what this is like unless you have been there and wear the t shirt. That's why support forums with like minded patients are a good place to get help, but remember we are not medically qualified, we don't have exactly the same medical history as you and we don't have access to the medical data your doctor has.

    So do some reading up yourself, but don't Google too much or you will scare yourself silly. And don't believe any quack who says if you eat turmeric or wear crystals in yiur hair you will be cured, ... Unless they have run clinical trials, are medically qualified, and have peer reviewed reports in genuine medical research publications, 😉

  • haha thank you bolly, i did like reading that last post :)

    yes google has been my friend up until recently when he became this scary monster with way too much information :)

    i completely understand nobody here is medically qualified but like you said no one can understand unless they have been through it, i try talking to family ( a little) and although it helps to a degree they will never actually know what i mean, so the wise words of support even in just the couple of hours i have been on here has made me feel somewhat better and for that i cannot express how grateful i am.

  • You're lovely Bolly.

  • Sorry to hear you have had this triple whammy. I know how you feel, when I thought I had serious issues, I didn't sleep for 3 months! I became reclusive and didn't really give a dam about work! Of course you have had a very serious diagnosis, you are entitled to feel like this and its perfectly natural.

    Cirrhosis has several stages and it is possible to live a relatively normal life for many years or even decades. Your body is essentially attacking its own Liver, the medications suppress the immune system, so it slows down the Liver damage. But once Cirrhosis is established it progresses, its a disease process aswel, all on its own.

    What you need to do find out now is how far has the Cirrhosis gone, you need some numbers here. To maximize your health you need a good look at your diet and exercise levels, many get great improvements in Liver function by a few simple changes.

    The fact its not alcohol related means you should be able to get on the transplant list at some point in the future should you need to. I'm sorry to say that with your condition its likely you will need this at some point, you are still young. I know of a lady who has had Cirrhosis since 2001 and the Liver numbers are still very good and she lives well.

    I would say the shear stress and anxiety with the diagnosis is making you feel sicker than you actually are, remember the Liver only needs 15-20% of it working to carry out its tasks. When it goes below that then all hell brakes loose, but with your doctor not being worried you must have had good numbers in terms of actual function. Yes, you have Cirrhosis, but you could still have 90% of your Liver working, it could be "early Cirrhosis"

    There are other sufferers who will be along soon and be able to give first hand experience to you.

  • Hi Ralph,

    thank you so much for your reply i cant explain how much i appreciate it.

    i hope your issues aren't as serious as you first thought and that you are keeping well?

    i don't want to feel like i am feeling sorry for myself because that's not who i am so can find it quite hard to talk to people and explain how things are and what im feeling so normally end up with the default answer of "im fine" so yeah i do feel a bit crappy and i guess that should be expected but then i end kicking myself for feeling down..... its a never ending cycle !

    i have read about the different stages and although i dont quite understand having that explained to me by the doc would be useful and it is of course one of the many questions i am compiling for the hospital appointment in may.

    i am reluctantly accepting that a transplant may be needed at some point, and at the moment i am banking on it hopefully being in many years time, fingers crossed :)

    i didnt know that the liver only needs 15-20% function and that does put it in to perspective a bit, yes i agree i am extremely stressed and anxious and this no doubt is having a detrimental effect on how i feel so hopefully once i start getting more and more answers from my doc this will start to calm down. i do tend to trust the doc maybe alot more than i should and have not previously pushed for numbers or stages that i am at but will definitely start to get that information and start to personally track how things are going because i think that will also put my mind at rest a bit.

    thank you again so much for taking the time to reply.

  • Paul05

    Hi Paul, im fine regarding my Liver, all bloods tests and scans text book.

    I was a 4 or 5 bottles of wine a week drinker and after a heavy couple of nights out in 2014 watching the world cup I got very ill. I have no idea what was wrong all they said was a infection of some kind and Gastritis. I have little doubt alcohol was the cause.

    I was ill for a year, at my worst I couldn't even get out of bed to go to toilet, I kept an empty 2 litre coke bottle by the bed to urinate in. My stools were yellow, ears ringing, blood shot eyes, mental confusion, head aches, no energy, weight loss. I was convinced I was dying. I was also getting to the stage where I had had enough! After a while I wanted to die so I wouldn't feel so crap, I ended up in a strange sense of calm about dying. I even looked forward to seeing my grandma if there was an afterlife.

    It makes me feel ashamed that I could have done myself in with alcohol, when there are people like you who have lived a healthy life and end up with this.

    Cirrhosis is a broad illness and is very complex. What you will read on the internet will be likely "end stage cirrhosis" or "decompensated cirrhosis." It doesn't sound like you are anywhere near there yet. You wont need a transplant next week, next month or even next year im sure. But it does pay to get all the information, but what you need now is some evaluation of the extent of the scarring. But really it depends on what type of person you are, I wanted to know everything about the Liver, some maybe better off just following doctors advice and not looking to hard at the issue.

  • Hi Ralph,

    im sorry to hear the problems you had and am so glad that you are now in a better place and i hope it never effects you in this way again.

    i am at the very beginning of my journey and there is obviously huge confusion and worry, not for myself but for my family and how this is going to effect them. i have 4 children, a wife who i am a full time carer for as she suffered a brain hemhorage 3 years ago that has left her blind and also a carer for my elderly grandmother, all of this while working full time and being on duty a lot of the time through the nights too so i have alot of responsibilities and since diagnosis everything feels like it has all collapsed in on me and figuring it out seems impossible but having people here like yourself that can offer that first hand knowledge and support is a huge help because i am thinking the worst and you are able to put a bit of perspective on it so for that i thank you.

    i am the type of person that needs to know the ins and outs of everything i can deal with anything eventually but i do need to get my head around it and for me thats getting facts and figures.

  • Hi Paul

    Thanks, im more or less back to normal, but I have been through all the emotions of thinking and feeling the worst and you will eventually find a balance and dust yourself down, its a tough road though. It must be very hard with the dependants you have too, im lost for words really.

    Is there anyway you can get some extra support to help you? family or friends? I think you will need some "you" time in the coming months.

    The fact you are so active is great, people who have immediate health concerns wouldn't be doing this, they wouldn't be able to. Even the strongest man on earth will be on his back if his Liver was about to fail.

    You will get the best results by getting all your blood tests and scans and start to manage your condition. The bloods take a little time to get a handle on, but there is plenty of science papers out there that explain it to you. You CAN do alot to improve your Liver health with some lifestyle changes too.

    I remember Andy Fordham the darts player collapsing in 2007 with "end stage Cirrhosis." He was given 6 months to live, well he is still here with his native Liver ! he changed his lifestyle.

    we are here to support as best we can and keep us posted Paul.

  • I agree with Ralph. I think now is a good time to look for help with all the support you are giving to others. After all, they rely on you to stay well.

    You've only given brief details so what I say may be totally out of order, but....

    Can you get a social worker on board via your GP to get some care hours for your grandmother.. She should be entitled to a few "free" hours even if just to help with shopping or cooking or cleaning. Age UK are a fantastic source of advice re what is available in your area.

    Can an organisation like the RNIB or local eye society/charity help with support and advice for your wife to enable her to be as independent as possible.

    Are the children old enough to step up and help with chores around the house etc.

    Many of us with AIH swear by online shopping, particularly for groceries.

    Just a few thoughts

  • Hi Bolly,

    i am used to being able to cope with everything so having to accept that might not be the case all the time is very hard because alot of people rely on me but over the past few months i have been trying to put things in motion so the strain can be taken or there are things in place for when i cant do something.

    family have finally realised that i may need help so that is good and guide dogs have been set in motion..... its juat a shame everything takes sooooo long to get moving :) yes i have no patients lol

    i am getting used to online shopping, thankfully...... i never liked the shopping trips anyway :)

  • Ooo assessment for a guide dog, that sounds exciting.

    Time to pack the Superman costume away for a bit Paul.

    Much as we like to pride ourselves in coping, sometimes friends and family LIKE helping... It makes them feel wanted and useful.

    And do pop over to Facebook and check out the FB group at facebook.com/groups/AIHorgUK/. It's a closed group so nothing appears on your timeline.

  • Forgot to answer what you asked about me. I've had chronic liver disease since about 1976. I'm 58, nearly 59 now. Normal life, married, kids, work pretty much non stop apart from maternity leave since I was about 22. I've had cirrhosis for at least 5 years probably a lot longer. I would suspect you have had the PBC and or AIH going along for many years. It takes about 20 or 30 years in some cases to go from healthy to cirrhotic. It's taking its toll on me now, but for 30 or so years apart from never quite having the energy or stamina I would have liked I was unaware how ill I was. Now that I am properly monitored by the docs, and take my pills, lol, I should be good for a while yet.

  • hear hear

  • About 3 years ago I went to one of my regular clinic check ups and my specialist said "I would like to introduce you now to Dr XYZ from the transplant unit at Queens Birmingham, just in case you ever need one I'm making the contact now". Well that came out of the blue and shook me a bit, but I got over it and decided I was quite happy with the liver I have already thanks and it's doing me just fine and no I don't think a transplant is inevitable. In fact I think the docs would far rather we managed with our original one, as transplant and prognosis post transplant comes with its own set of issues.

  • i am glad you are now managing it well and i hope things are as good as they can be.

    i have to admit transplant scares the hell out of me and i know and hope that may never happen for any of us but from the very little information i have read so far prognosis does not seem all that great especially when you are thinking long term.

  • I too have pbc and aih,I wrote you a long reply then deleted it in error,if you want to know my story and what has helped me,please get in touch

  • Hi, of course i would love to hear from you and your experiences.

    hope you are well and look forward to hearing from you soon.

  • I don't know how much use anything I say will be, but I'll try. I was silly in my youth and have alcohol-related liver disease (which won't ever go away). I'm also a survivor of end-stage cirrhosis.

    To aid my recovery I was instructed to drink two litres of water a day, to help my liver and kidneys (which are also dodgy due to CKD, which I was most likely born with) flush my system through. If you haven't done so already, I would advise blood tests to ensure that you have no vitamin deficiencies (I'm on prescribed calcium, vitamin D and a B12 injection because my body can't make B12 on its own). I'm also on Amitriptalyne because I've been left with CFS (which is still better than dying, of course, but not ideal). If you have ascites make sure you ask for something such as Spyronolactone to help you shift it (I also had 6 litres of fluid drained from my abdomen while in hospital, but my case was very extreme and I'm lucky to be alive).

    The only other advice I can give is the usual: plenty of rest when needed, and lots of whatever your version of chicken soup for the soul happens to be. Wishing you all the best.

    Gemma.

  • Hi Gemma, thank you for your reply, I have a bit of a wait unfortunately to find out test results etc but it means so much that people like yourself take the time to help and offer support.

    I wish you all the best

    Paul

  • Hi sorry to hear your problems my wife has liver Cirrhosis and is now on the transplant list as hers is very bad.

    She was taking Prednisolone and it caused her lots of problems the main one for her was the huge weight gain, as it had no effect on her in two weeks they kept reducing the dose over the next four weeks as you cannot just stop taking it

    Also they should have given you a blue 'I am on steroids' sheet to carry with you at all times

    If you look on the web Prednisolone causes lots and lots of problems

    If I was you I would contact the doctor ASAP tell them that you are having a bad reaction with one of your meds, there are different meds that they can put you on if you do get a bad reaction but as always they normally start with the cheapest to see if it works and only change if you have problems

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