help and advice much appreciated !

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.

5 Replies

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  • Hi you will get some good advice and help on here, firstly have you joined the pbc foundation they are great for any info or support with pbc.

    Personally I would contact your GP and ask for an appointment to talk about your pbc and medication. Then if you still need to contact your specialist and try to get an earlier appointment.

    I am very impatient and unfortunately don't have a GP or specialist that understand my urgency to get sorted.

    Phone then foundation or email them for good up to date advice.

    But most of all worry does not help or do any good.

    All the best.

  • Hi Twinkle,

    thank you for your reply i will join the pbc foundation.

    i completely agree with you about the impatient part and i too struggle between appointments... it drives me crazy lol

    i hope you are well and any issues you have are doing good?

    take care

  • No, its not all doom and gloom! You've got some good things going for you. And you can always come here for advice and support!

    Now that you know you have Autoimmune Hepatitis, you can monitor and treat it, which is a big step forward. You can't manage what you aren't aware of.

    You've been on Ursodiol, so you know that you can tolerate that medication. Most likely, the Ursodiol was not keeping your levels down because you had the undiagnosed AIH going on as well. Adding the Prednisolone should help get those levels back down.

    Don't worry about taking all these medications - you know you can tolerate Ursodiol, no problems with that one right? Adcal D3 is simply a calcium and vitamin D supplement. The Prednisolone is a steriod, though. Sometimes you can have side effects from those. Do you know what side effects you should be looking out for? You might want to make a note to discuss this further with the doctor when you go back. For example, if it makes you feel achey, they might suggest something to ease the muscle fatigue while you are on the steriods. Also ask about your sleep. There might be a simple treatment to help you out with that. Keep in mind that any side effects you are feeling now might not be permanent. Just needs to be identified and reported to the doctors.

    I don't know if it helps, but my fatigue appears to be from a Vitamin D deficiency, which is very common in people that have liver issues. You have already been prescribed Adcal D3 to supplement your Vitamin D, but it might be worth it to ask if your Vitamin D levels could be checked and monitored going forward. Definitely ask about fatigue when you go back - the doctor might have some ideas to investigate further and see if they can help.

    For the cirrhosis, do you know how much scar tissue is there? Its not a good sign, but its not a death sentence. The liver can function at nearly 100% even if a lot of scar tissue is present. Getting on the medications and learning to manage your flare ups can help to slow down the development of more scar tissue. And it looks like you've got a good team of doctors to help monitor and manage your liver for you. A good diet and keeping your body as healthy as possible can help support the liver so it can function at full capacity even with cirrhosis. You might not have much control over the wait between appointments and worrying about what the doctors might say or what they might find. But you do have control over your diet, avoiding alcohol, getting fresh air and exercise, and taking good care of your mental health. All of these things can help you on your journey.

    I know that when I worry, a lot of my energy goes into thoughts and questioning and anxiety and depression. I found it helpful to channel some of that energy into gentle exercise and looking out for my diet and overall health.

    Good luck and keep us posted! Tell us more about your side effects on the steroids. I don't know a whole lot about AIH and treatment options, but there are others on here that have lots of experience with it. Maybe check out the British Liver Trust community, too. There's some good info on there. Be well!

  • Hi Chynablue,

    thank you so much for your reply, it means alot to me.

    thank you for your suggestions, i will be making notes of the side effects i am getting from the drugs and taking them with me to see the doc in may. mostly i am now feeling exhausted, constant aches, no motivation, vuite twitchy at times and general feelings of being down and not well. daily tasks are such a struggle and i can be a bit less tollerent of people at times.... but that could just be them being stupid and not my fault whatsoever.... lol (i am joking about that bit ) :)

    i am also told there are many more side effects that could come on at any time, but i hope not.

  • Hi chyna blue...

    It's really scary but it isn't a death sentance and it's good now that u know u also have aih.. I'm sure that's why your bloods weren't stabilising..

    I would suggest u join the aih pages on Facebook there are lots of people with an overlap of Aih and pbc, I'm awaiting biopsy results myself with a suspected overlap of both so I've been following intenetly on fb and they seem to all do well with a healthy diet and a good medical team.... so they can help to reassure u.

    Best of luck x

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