Autoimmune Hepatitis (AIH) Patient Advice Leaflet

What is AIH?

AIH is an autoimmune chronic liver disease in which the body’s own immune system causes damage to cells in the liver. If left untreated it can lead to cirrhosis (scarring of the liver), which has a higher risk of liver cancer.

What causes AIH?

AIH is an autoimmune disease, in which the body’s own immune system mistakenly attacks the cells in your liver. No one knows why this happens. Some people with AIH have relatives with the condition. This suggests that people with AIH may have an inherited predisposition to the disease, which is finally triggered by something in the environment. We do not, however, know what the environmental trigger is (or triggers may be).

30-50% of people diagnosed with AIH have another autoimmune condition, such as thyroid disease, rheumatoid arthritis, ulcerative colitis or Type 1 diabetes.

What are the symptoms of AIH?

Common symptoms associated with AIH include jaundice, dark urine and lethargy. Because of related conditions, some people with AIH may have joint pains, diarrhoea and feel generally unwell. Most patients with well-controlled AIH have no symptoms at all.

What is the treatment for AIH?

There is no cure for AIH but there are effective treatments. All patients are initially treated with a high dose of steroid, either prednisolone or budesonide. This helps to stop inflammation in the liver. Once inflammation in the liver is controlled, a longer term immunosuppression tablet, usually Azathioprine or Mycophenolate is added and the steroid is reduced depending on your liver blood tests. The main goal of treatment is to stop the liver inflammation by getting your immune system back under control.

Reducing inflammation in the liver will improve your symptoms, improve your liver blood tests, reduce the degree of scarring and help prevent long-term liver damage and liver failure. Once treatment has started it is continued long-term.

What should I expect from Addenbrooke’s Hospital?

You will be under the specialist care of a hepatology consultant. When you are first diagnosed with AIH, you may require weekly or similarly frequent outpatient appointments so that we can adjust your medication and monitor your disease closely. Once your disease is well-controlled, your outpatient appointments and blood tests will become less frequent. It is important that you attend your appointments and have any tests that are recommended because they are vital to your care. If you develop cirrhosis as a result of AIH, you will have an ultrasound scan of the liver every six months. These ultrasound scans are important because people with cirrhosis have increased risk of liver cancer, and regular scans can help to detect liver cancer at an early and treatable stage.

We will do our best to keep the monitoring of your AIH up-to-date. We strongly encourage you to become familiar with the tests you need, however, to ensure these tests happen when they should.

Contacts

If you require any further information about this leaflet or advice about your condition please contact the Addenbrooke’s autoimmune liver disease advice line on 01223 216109.

Where can I receive more information and support?

AIH Support - Help for those affected by Autoimmune Hepatitis: AIH Support (opens in a new tab)

British Liver Trust: British Liver Trust (opens in a new tab) Helpline: 0800 652 7330 (10:00 to 15:00 Monday to Friday)

UK-AIH : UK-AIH (opens in a new tab)

Psychological Wellbeing Service offers treatments across Cambridgeshire and Peterborough CPFT NHS Trust (opens in a new tab) Tel: 0300 300 0055

What research is happening in AIH

We need to understand further the cause of the disease and genetics of the disease. If you would be interested in taking part in research or would like to discuss it further, please call 01223 256225 or e-mail Sister Abi Ford on:

Email the Hepatology team