Autoimmune liver diseases
Autoimmune liver diseases include conditions such as Autoimmune Hepatitis (AIH), Primary Biliary Cholangitis (PBC) and Primary Sclerosing Cholangitis (PSC).
The British Medical Journal estimates that AIH, PBC and PSC represent 'perhaps 5% of all liver diseases, although no registries exist to estimate the true prevalence. They are presumed autoimmune conditions, usually considered as a diagnosis after viral, metabolic, and drug induced liver injuries have been excluded.
The combination of medical and surgical treatments means that, if appropriately diagnosed and managed, these diseases overall have an excellent prognosis.'
Hints & Tips for AIH
We are grateful to the AIH Support Group for their permission in allowing us to re-create their Hints and Tips Guide. You can download a printable version here. If you would like further support, please contact our helpline on 0800 074 3494. We also run LiverChat! support groups in Bournemouth and Portsmouth - with other locations planned in the future.
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Please note that this advice is not formulated by medical professionals, so always consult your own medical professionals​.
01
Take an active interest in your condition and its management.
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Keep track of blood test results, consultants letters etc. Find out if the hospital or GP (or both) will do blood tests, prescribe medication and so on. Systems vary across the country and it is worth understanding how it fits together in your area and who does what.
02
Be prepared for initial weight gain when medication is started.
Have healthy snacks to hand and watch what you eat.
03
Call in favours to help you out as you recover your strength.
You can always repay people in kind later.
04
Take your medication with food (unless instructed otherwise).
This can reduce side effects.
05
Do not ‘soldier on’ with unbearable side effects from the medication.
There are several choices of medication and it can take some time to find the right one(s) for you as an individual.
06
Always remember that most people with Autoimmune Hepatitis (AIH) live a normal life.
07
Work at building a relationship with your consultant and his/her team.
If they can see you are taking responsibility they will go the extra mile to help you.
08
Don’t expect your GP to be an expert in AIH.
The vast majority will never have seen a case before. So remember they are learning about the condition as well and will often need to ask the consultant for specific advice.
09
Ask your consultant what you should do if you feel ill.
Or suspect your readings are increasing between consultations. Having a plan in place really helps if the situation arises.
10
AIH is rare and Gastroenterologists may not deal with many cases.
Sometimes they will need to ask specialist hepatologists for advice themselves and sometimes you may feel you would get better care being seen by a team who look after a lot of patients with AIH.
11
Remember, no medication is risk free.
The list of possible side effects of medication used in AIH is long and therefore a bit overwhelming. Remember most people have very few side effects or even none. Discuss the risks and benefits with your consultant. The more you have been involved
in agreeing on the treatment protocol the easier it is to stick to the regime.
12
AIH, like many liver conditions, involves quite a few blood tests.
If you are someone who has difficulty when people take blood remember that a warm arm/hand and drinking plenty of water always helps the process.
13
Make sure you have an annual flu vaccination.
14
Thinking about having a baby?
Please talk to your doctor prior to conception so that your treatment can be optimised (some drugs are safe in pregnancy but others may need to be changed)