Patient stories
Anninder's story
Read Anninder's storyI have a liver condition called Autoimmune Hepatitis and I now know the warning signs
Louise's story
Read Louise's storyI was bleeding internally and had burst varices. I needed to get to hospital ASAP
You can read more patient stories here
monitoring your condition
It is important to have regular appointments with your doctor or liver specialist so they can monitor your condition.
They will be able to provide you with more information on how often these should be, who with, and what to expect.
As you start your treatment, you might have more blood tests to monitor how you are responding. As your condition becomes more controlled, you will have less.
Your doctor will balance treating you effectively with reducing side effects from your medicines. They will do this by keeping the doses as low as possible. They will check your ALT, AST and IgG levels. These will show how well you are responding to treatment. The aim is to normalise these blood tests and reduce your symptoms.
The time it takes to improve the inflammation in the liver will be different for everyone. If you are well enough to stop taking medication, your doctor or liver specialist will discuss the risks and benefits. If you do stop, you will be monitored more regularly for a while.
What is a "Flare"?
A flare can happen when you are not responding to treatment.
This means your ALT and AST levels will be higher than they should be. You might have the same symptoms as before, new symptoms, or none at all.
Flares can happen because your treatment isn’t working well enough. They can also happen if your treatment has been stopped due to your autoimmune hepatitis
going into remission. This is called a ‘relapse’. If you relapse you will need to start
treatment again.
About 7 in 10 patients who go into remission and stop treatment will relapse within a year.
More information
Pregnancy
Many people with AIH get pregnant and have children. It’s a good idea to talk to your clinical team first, so they can advise you. If you get pregnant let them know as soon as possible. They will be able to carefully monitor you during your pregnancy and after delivery.
It’s very important to talk to your clinical team about pregnancy if you take mycophenolate mofetil. This medicine has been linked to problems with pregnancy when taken by the mother or father. So it is important to safely change to a different medicine.
Do not stop your treatment while you are pregnant without speaking to your clinical team.
Diet
There is no special diet if you have autoimmune hepatitis. The main medicines for the condition can interact with certain foods. So you might need to avoid those.
Generally you should have a healthy balanced diet. Lots of vegetables, fruit, wholegrain carbohydrates (such as wholemeal bread or brown rice) and lean protein (such as chicken, fish or tofu). Cut down on highly processed foods and snacks, especially those that are high in fat, sugar, or salt.
If you have cirrhosis, as well as eating a healthy balanced diet you may need to follow special advice. You can read more about a well-balanced diet and nutrition for people with cirrhosis here.
Weight
Putting on weight can be a side-effect of taking steroids. Being physically active and eating healthily will help you manage your weight. It is important to keep your weight healthy, as this helps stop more damage to your liver.
If you are struggling to keep to a healthy weight ask your doctor for advice. You might need a diet tailored to you, or a referral to a dietitian.
Keeping fit
Doing regular physical activity or exercise helps keep you strong and prevent muscle wasting. This is especially important if you have cirrhosis.
Do what you can manage each day – doing something, even something small, is much better than nothing.
Looking after your mental health
Living with liver disease can be hard. As well as coping with physical symptoms you may be juggling changes to your daily life, practical issues, and worrying about the future. So it is not surprising that most people will struggle at times.
Your GP will have lots of experience with mental health issues and can refer you if you need support.
Read more here for advice and information on looking after your mental wellbeing.
Support for you
The British Liver trust is here to support anyone with a liver condition. And their friends and family. We offer an online community and support groups where you can connect with others and share experiences.
Find out more about how we can support you here.
You can also call our helpline on 0800 652 7330
The helpline is run by specialist liver nurses. They are there from 9am, to 3pm Monday to Friday (excluding bank holidays)
Useful links
Living with a liver condtion
find out more
Looking after your mental health
Find out more
Stigma and liver disease
find out more
Useful words glossary
Find out moreSpecial thanks
All our publications are reviewed by medical experts and people living with liver disease.
We would like to thank:
Our patient focus group and case studies.
Our patient reviewers, Anna Ellis, Louise Palmer, Angela Skinner and Jennifer Voller.
Our clinical reviewers, Dr Vikki Gordon, University Hospitals Coventry and Warwickshire NHS Trust and Sue Eldred, Wye Valley NHS Trust.
Ann Brownlee, Chair of Trustees, AIH Support
Published: June 2023
Review Due: June 2026