Autoimmune Hepatitis

Key points

  • Hepatitis means there is inflammation in the liver
  • If you have autoimmune hepatitis, it means your liver is being damaged by your own immune system
  • Medicines can usually control autoimmune hepatitis, but there is no cure
  • The earlier treatment starts, the better
  • You will need to see a liver doctor regularly
  • Eventually some people with autoimmune hepatitis need a liver transplant

What is autoimmune hepatitis?

Mother and daughter embracingAutoimmune hepatitis is a rare long-term (chronic) disease that can gradually get worse over time.

It happens when the body’s own immune system damages the liver. This causes inflammation (hepatitis) and injury in the liver.

If it’s not treated, the inflammation can lead to scarring, then onto cirrhosis and liver failure.

People with cirrhosis, whatever the cause, are at risk of serious complications like fluid in the belly (ascites), bleeding from the food pipe or stomach, confusion, or liver cancer.

Autoimmune hepatitis mostly affects women and girls. It might come on in children, young women or in older women. Rarely, men or boys can get it.

It is not uncommon for people with autoimmune hepatitis, or their family members, to have other autoimmune conditions such as type 1 diabetes, rheumatoid arthritis, thyroid disease or haemolytic anaemia.

What are the symptoms of autoimmune hepatitis?

People with autoimmune hepatitis might not have any symptoms. If there are symptoms, they might be similar to the symptoms of other types of hepatitis, or the flu. Rarely, the first sign of autoimmune hepatitis is when liver suddenly stops working normally (liver failure).

Signs you might have autoimmune hepatitis include:

  • feeling very tired
  • itching
  • yellow skin or whites of the eyes (jaundice)
  • nausea or vomiting
  • belly ache
  • mild flu-like symptoms
  • weight loss
  • light coloured poos
  • dark urine
  • joint pain
  • rashes
  • periods stop
  • large liver or spleen
  • spider veins on the skin

All of these symptoms could be something else. If you are worried you or your child may have autoimmune hepatitis, see your doctor. They may refer you to a gastroenterologist or hepatologist.

Read more about the symptoms of liver disease

How is autoimmune hepatitis diagnosed?

Doctors diagnose autoimmune hepatitis through:

These look for raised levels of chemicals in the blood that show how well your liver is functioning. Your doctor may also look for autoimmune antibodies and run other liver tests to rule out other forms of liver disease.

The doctor may order an MRI scan, CT scan or ultrasound to get detailed pictures of the liver.

To confirm the diagnosis and to assess how much liver damage there is, a small sample of the liver may be taken to look at under a microscope.

Read more about liver tests

Why did I get autoimmune hepatitis?

Autoimmune hepatitis is rare. It can happen at any age, and affects more women than men.

We don’t know why some people develop autoimmune hepatitis. Like other autoimmune conditions, it’s thought it might be triggered by an infection or certain medicines. It is likely that some people inherit an increased chance of getting autoimmune hepatitis.


How is autoimmune hepatitis treated?

Autoimmune hepatitis can’t be cured. But there are treatments to control the symptoms and prevent more serious complications. Treatment works best when it’s started early.

The first treatment is to slow or stop the immune system from attacking the liver. The main medicine used for this is the steroid prednisone (or prednisolone). Another medicine, azathioprine, may be needed as well.

It can take 6 months or more for the disease to go into remission. If you stop taking the medicines, it might come back. Some people need treatment on and off their whole life.

Taking high doses of steroids for a long time can lead to other side effects including:

  • anxiety and confusion
  • diabetes
  • thinning bones (osteoporosis)
  • broken bones
  • high blood pressure
  • cataracts
  • glaucoma
  • weight gain

To reduce the risk of these side effects, doctors normally give a high dose of steroids at first then gradually reduce them to the lowest level possible to control your symptoms. Usually a second medicine that doesn’t have these side effects is used long-term to keep the liver healthy and to prevent episodes of inflammation.

If the disease is very severe, the liver can get so damaged that you develop liver failure. In this case, you might need a liver transplant.

People with autoimmune hepatitis will need to see a gastroenterologist regularly over the years and will have regular blood tests to check their liver function.

Read more about liver treatments

Additional information and support


What next?

Read more about living well

References

Canadian Liver Foundation. Autoimmune Hepatitis

Hepatitis Australia. What is hepatitis?

Johns Hopkins Medicine. Autoimmune Hepatitis

Mayo Clinic. Autoimmune Hepatitis

National Organization for Rare Disorders (NORD). Autoimmune Hepatitis

Roberts SK, Kemp W. Salvage Therapies for Autoimmune Hepatitis: A Critical Review. Semin Liver Dis. 2017 Nov;37(4):343-362. doi: 10.1055/s-0037-1607453. Epub 2017 Dec 22.

The Royal Children’s Hospital Melbourne, Autoimmune hepatitis

Reviewed November 2022

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