Autoimmune hepatitis or primary biliar... - British Liver Trust

British Liver Trust
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Autoimmune hepatitis or primary biliary cirrhosis?

Casper6
Casper6

Hi everyone sorry I dont really have much input as I am new to the forum and was only told a week ago that my liver function tests were way above the norm. Sending me into overdrive. However I wish you all the very best of health and am sending good wishes x please may I ask if anyone out there has had to deal with either autoimmune hepatitis or primary biliary cirrhosis? This is what my consultant thinks I may have. He is just waiting on a few more bloods. Seeing him next Monday! He played it down saying its treatable with medication however I read the prognosis of 10 years! I would really appreciate hearing from any sufferers please tell me you experiences x

16 Replies
oldestnewest

Forget the prognosis of 10 years. If properly controlled you can live a normal life span with these conditions. You may need a liver biopsy to totally confirm your diagnosis and to see which bit of your liver is being attacked (by your immune system). Both Auto Immune Hepatitis and Primary Biliary Cholangitis are immune system related.

If you do Facebook you might find the AIH UK & NI support group a very welcoming place to be. Over 2000 members - all of whom either have AIH or are supporting loved ones with the condition. Many members also have PBC as you can have both conditions at the same time - often referrred to as AIH/PBC crossover.

You'll find the group at:- facebook.com/groups/AIHorgUK/

There are members on there who have had the condition for 20+ years who are no nearer needing transplant now than when first diagnosed. Whilst the medication comes with its own challenges they are very effective at controlling the condition.

All the best, Katie

You'll find very good and more accurate information on the BLT pages rather than good old Google or Yahoo.

britishlivertrust.org.uk/in...

britishlivertrust.org.uk/in... (PBC is no longer called Primary Biliary Cirrhosis).

Katie

I absolutely second what Katie says. I was diagnosed with AIH nearly a year ago but after 6-8 months of treatment (still ongoing), I am leading a fairly normal life. The Facebook forum and this website are excellent for help with any questions - everyone is very supportive.

Trust9
Trust9Administrator

Good morning Casper6,

Welcome to this friendly forum.

I can see already you are getting lots of support from our forum members.

I have just added a link 'questions for your doctor' which may help to guide your consultation along with the information from the forum members.

britishlivertrust.org.uk/li...

You can also call the nurse led helpline on 0800 652 7330 Mon-Fri 10am-3pm should you wish to chat .

Best wishes,

Trust9

I'm sorry I'm not able to give you any helpful advice about your condition. Others here are far more qualified.

I would like to offer a huge warning about

' prognosis'.

Until you have a definite diagnosis you're not sure what you're dealing with. Even then each person differs in their health journey.

Looking at these predictions only leads to additional stress and anxiety that doesn't help the original disease.

When I recovered after weeks in intensive care from liver failure I was eventually diagnosed with cirrhosis. I asked for a prognosis from my specialist and was told ' don't invest too much in your pension', three to five years worse case, 10 to 15 years if you're lucky.

20 years on I'm still in reasonable health, working full time and beginning to worry I haven't invested enough in my pension!

Wishing you all the best for a very long future.

Casper6
Casper6 in reply to Tony20

Thankyou again Tony 20

There is a group - here on 'Health Unlocked' - which is dedicated to PBC (or primary biliary cholangitis - as it is now called). PBC rarely problems, now, as it is so well controlled by treatment and tablets.

I would search for the 'PBC Foundation' on 'Health Unlocked, and give their friendly trained advisors a ring - they are wonderful.

If it does turn out to be PBC, then nowadays, with current treatments, PBC rarely causes cirrhosis, and most people with PBC go on to have perfectly full, normal, active lives.

Casper - have AIH and cirrhosis since 1988 and still very much alive and kicking! I remember reading all this and thinking i would be dead by 30...Don't look at prognosis - it is all wrong. Look after yourself, get a good specialist and don't think about it too much! good luck!

Casper6
Casper6 in reply to lawrencepark

Morning Lawrencepark thankyou soooooo much for taking the time to answer me. I just woke up and checked my phone and you have given me the inspiration I need to get through YET ANOTHER rainy day-! Keep on keeping on xx

Casper6
Casper6 in reply to lawrencepark

Morning again . Plesde dont be offended but di you ever have the odd glass of wine or is it strictly taboo!

AyrshireK
AyrshireK in reply to Casper6

Whilst your liver function is currently out of what it would be wise to abstain until your condition is properly identified and under control.

The guidance for AIH doesn't demand abstinence, a glass of wine every now and then is 'allowed' BUT you have to balance up whether it is worth giving your liver an additional toxin to deal with whilst also being assaulted by your immune system. You certainly need to stick well below guideline levels and perhaps seek out safer alternatives.

This is a regular topic of discussion on the previously mentioned AIH Facebook page and one which has been asked of some of the top AIH boffins in the UK at their conference type meetings.

All the best,

Katie

Casper6
Casper6 in reply to AyrshireK

Thankyou Katie x if I never drink again k really dont bring mind I just want s healthy liver but still coming to terms with the change of lifestyle ..... bring it on x

lawrencepark
lawrencepark in reply to Casper6

Casper my doc told me to have once in a while for celebrations. I just drink a tiny bit in the glass. When i overdo it, i feel terrible and guilty. I have been told the cirrhosis state i have is vey fragile and i dont' want to tip it over for some dumb decision. I love wine etc, but have had to forego most of my adult life. try to enjoy other things. My liver disease, while is stable but serious (varices, enlarged spleen), does not generally mean daily pain and other annoying and dangerous symptoms, like colitis, nephritis, heart probs. So i think i am lucky and try not to push it. If you have alcohol problem, you need to get it addressed. good luck

Casper6
Casper6 in reply to lawrencepark

Thankyou lawrencepark. I did actually have ulcerative colitis when I was a teenager. You are right of course about alcohol and I would feel exactly the same if I were to drink. I don't have a drink problem but I did enjoy my wine! But my health means much more. I bought some non alcoholic wine today and it's my 60th birthday next Sunday so will drink that and thank my lucky stars I have found about I have a health problem before its too late. Enjoy your Sunday lawrenceoark .

Sounds like a plan. I always joked that it was good i found out about my liver disease after university! And have they told you if PBC or AIH yet?

Casper6
Casper6 in reply to lawrencepark

Not yet I should hopefully find out tomorrow night! For my sins! I spoke with the lady in the wine shop and it turned out she had cirrhosis and was an alcoholic but hasnt drunk for 5 years! I didnt even drink when I was young it was only once my children grew up and I got a social life! Still at least I enjoyed the last16 years!

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