Living with
autoimmune hepatitis
The information on this page is for:
- Adults with autoimmune hepatitis or suspected autoimmune hepatitis
- Family, friends, carers, and healthcare professionals.
On this page:
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.
I’ve struggled to get people to understand my condition at work. It’s helped to frame it slightly differently by saying ‘I’ve got an autoimmune condition that attacks my liver
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.
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Support
How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
Your feedback
This content was last reviewed: June 2023
Our expert reviewers:
We would like to thank everyone who helped with creating and reviewing this page. Including Dr Vikki Gordon, University Hospitals Coventry and Warwickshire NHS Trust and Sue Eldred, Wye Valley NHS Trust. Ann Brownlee, Chair of Trustees, AIH Support. And all our patient reviewers.
Find out how we make our patient information.
Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.
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