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Genetic and Rare Diseases Information Center (GARD)

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Autoimmune hepatitis


Other Names for this Disease
  • AIH
  • Autoimmune chronic hepatitis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Your Question

It was recently confirmed that I have autoimmune hepatitis. Who can I contact to learn more about this condition?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is autoimmune hepatitis?

Autoimmune hepatitis is a disease in which the body’s immune system attacks liver cells. This immune response causes inflammation of the liver, also called hepatitis. The disease can be quite serious and, if not treated, gets worse over time, leading to cirrhosis of the liver and/or liver failure.[1] Autoimmune hepatitis sometimes occurs in relatives of people with autoimmune diseases, suggesting a genetic cause. This disease is most common in young girls and women.[2]
Last updated: 6/8/2011

Are there different types of autoimmune hepatitis?

Autoimmune hepatitis can be classified as type 1 or type 2. Type 1 is the most common form in North America. It can occur at any age but most often starts in adolescence or young adulthood. About half of those with type 1 have other autoimmune disorders, such as type 1 diabetes, proliferative glomerulonephritis, thyroiditishemolytic anemiaGrave's diseaseSjögren’s syndrome, or ulcerative colitis.[1][2] Type 2 autoimmune hepatitis is less common, typically affecting girls aged 2 to 14, although adults can have it too.[1]
Last updated: 4/22/2011

What symptoms are associated with autoimmune hepatitis?

Symptoms of autoimmune hepatitis range from mild to severe. Fatigue is probably the most common symptom of autoimmune hepatitis. Other symptoms include:[1]

  • an enlarged liver
  • jaundice
  • itching
  • skin rashes
  • joint pain
  • abdominal discomfort
  • spider angiomas, or abnormal blood vessels, on the skin
  • nausea
  • vomiting
  • loss of appetite
  • dark urine
  • pale or gray-colored stools
People in advanced stages of the disease are more likely to have symptoms related to chronic liver disease, such as fluid in the abdomen—also called ascites—and mental confusion. Women may stop having menstrual periods.[1]
Last updated: 6/8/2011

What causes autoimmune hepatitis?

Although the exact cause of autoimmune hepatitis is unknown, evidence suggests that liver injury in a patient with autoimmune hepatitis is the result of a cell-mediated immunologic attack. This autoimmune attack may be triggered by genetic factors, viral infections, or chemical agents.[3] Autoimmune hepatitis sometimes occurs in relatives of people with autoimmune diseases, further suggesting a genetic cause.[2]
Last updated: 4/22/2011

How is autoimmune hepatitis diagnosed?

The diagnosis of autoimmune hepatitis is typically made based on symptoms, blood tests, and a liver biopsy.[1]
Last updated: 4/22/2011

How might autoimmune hepatitis be treated?

Some people with mild forms of autoimmune hepatitis may not need to take medication. Doctors assess each patient individually to determine whether those with mild autoimmune hepatitis should undergo treatment.[1] Treatment works best when autoimmune hepatitis is diagnosed early. With proper treatment, autoimmune hepatitis can usually be controlled. In fact, studies show that sustained response to treatment stops the disease from getting worse and may reverse some of the damage.[1]

The primary treatment is medicine to suppress, or slow down, an overactive immune system.[1] Prednisone or other corticosteroids help reduce the inflammation.[1][2] Azathioprine and mercaptopurine are drugs used to treat other autoimmune disorders, which have shown to help patients with autoimmune hepatitis as well.[2]

In about seven out of 10 people, the disease goes into remission within 3 years of starting treatment. Remission occurs when symptoms disappear and lab tests show improvement in liver function. Some people can eventually stop treatment, although many will see the disease return. People who stop treatment must carefully monitor their condition and promptly report any new symptoms to their doctor. Treatment with low doses of prednisone or azathioprine may be necessary on and off for years, if not for life.[1]

People who do not respond to standard immune therapy or who have severe side effects may benefit from other immunosuppressive agents such as mycophenylate mofetil, cyclosporine, or tacrolimus. People who progress to end-stage liver disease—also called liver failure—or cirrhosis may need a liver transplant. Transplantation has a 1-year survival rate of 90 percent and a 5-year survival rate of 70 to 80 percent.[1]
Last updated: 6/8/2011

Who can I contact to learn more about autoimmune hepatitis?

You can contact the National Digestive Diseases Information Clearinghouse (NDDIC), a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), for more information about autoimmune hepatitis. The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services. NDDIC provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. The NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases.

National Digestive Diseases Information Clearinghouse (NDDIC)
2 Information Way
Bethesda, MD 20892–3570
Phone: 1–800–891–5389
TTY: 1–866–569–1162
Fax: 703–738–4929
Email: nddic@info.niddk.nih.gov
Web: www.digestive.niddk.nih.gov

You can also obtain information about autoimmune hepatitis from the following organizations.

American Autoimmune Related Diseases Association, Inc.
22100 Gratiot Avenue
Eastpointe MI 48021-2227
Phone: 586-776-3900
Toll-free: 800-598-4668
Email: aarda@aarda.org
Web: http://www.aarda.org/ 

American Association for the Study of Liver Diseases
1001 North Fairfax, Suite 400
Alexandria, VA 22314
Phone: 703–299–9766
Fax: 703–299–9622
Email: aasld@aasld.org
Web: www.aasld.org

American Liver Foundation
75 Maiden Lane, Suite 603
New York, NY 10038–4810
Phone: 212–668–1000
Toll-free: 1–800–GO–LIVER (465–4837) or 1–888–4HEP–USA (443–7872)
Fax: 212–483–8179
Email: info@liverfoundation.org
Web: www.liverfoundation.org
Last updated: 2/4/2013

References