Living with autoimmune hepatitis: What can help?

Autoimmune hepatitis (AIH) is a rare disease in which the body's immune system attacks the cells of the liver. Like other autoimmune diseases, researchers don't know what causes autoimmune hepatitis for the approximately 100,000-200,000 people living with the condition in the U.S.

AIH symptoms vary, but often include fatigue, itching, aching joints, and abdominal pain. Fatigue and medications with unpleasant side effects can make living with autoimmune hepatitis feel exhausting. These tips, which include learning more about the condition, knowing what to expect, and finding support can help you live better with the condition.

The same treatments don't work for everyone

Often, AIH doesn't have symptoms in the beginning, and doctors only discover it when evaluating blood tests for another purpose. Some patients are diagnosed after an acute attack that can include jaundice (yellowing of the skin), severe itching, or abdominal pain.

Not everyone diagnosed with AIH needs to start treatment right away. Your hepatologist will make a decision based on your blood test results and disease progression. When patients start treatment, doctors typically treat AIH first with a glucocorticoid (such as prednisone) to control inflammation in the liver and prevent future scarring.

Adding a second medication, such as azathioprine (Azasan or Imuran) or 6-mercaptopurine (Purinethol), can allow patients to reduce or eliminate prednisone, which can have serious side effects. It's important to know that these secondary treatments can also cause side effects including allergic reactions, inflammation of the pancreas, abnormal liver blood tests, and an increased risk of developing certain cancers.

The standard treatment doesn't work for everyone: it's estimated that 20 to 24% of patients have an incomplete response to treatment, or don't respond at all. It's important to see your doctor regularly to continue monitoring your treatment progress.

Autoimmune hepatitis diet

While there is not a specific diet recommended for autoimmune hepatitis, certain dietary changes can help reduce the side effects of the most common treatment, prednisone.

One side effect of prednisone is that it contributes to bone density loss. Maintaining a diet with enough calcium can help lower your risk of osteoporosis and bone fracture.

Prednisone can also lead to food cravings and significant weight gain. A registered dietician can help you plan a diet that helps you maintain a healthy weight while taking prednisone. If you do gain weight, don't beat yourself up – it's very common with prednisone use. If AIH goes into remission or patients are able to reduce their dose, many find it relatively easy to lose any weight gained while taking prednisone or a higher dose.

How to find support

Living with a rare disease can feel isolating. Connecting with others who have been impacted by AIH can be extremely helpful. The Autoimmune Hepatitis Association’s (AIHA) mission is to “provide support and hope to patients and families affected by autoimmune hepatitis through disease education and provision of research opportunities.” On their site, they offer listings of patient-preferred AIH doctors, AIHA webinars, links to relevant social media feeds, and a list of other helpful resources, like the Mayo Clinic, the American Liver Foundation, and the National Institute of Health. The American Liver Foundation has a page that includes several personal stories about people living with AIH. 

There’s a Facebook group for everything these days. AIH support groups are no exception. The biggest one, AutoImmune Hepatitis Support Group, has over 6,500 active members and was founded by an AIH patient. Autoimmune Hepatitis Group encourages its members to “share thoughts, concerns, questions, links, new treatment methods, pictures of your family, pets or hobbies, or just vent if you need to.” If your child has AIH, the Autoimmune Hepatitis in Children group is a great place for parents to find resources regarding AIH in kids. 

While AIH may be a rare disease, affecting between 100,000-200,000 people in the U.S., autoimmune diseases in general are much more common – approximately 50 million people in the U.S. have an autoimmune disease. Symptoms vary, but you may find a shared experience with others living with autoimmune diseases, such as fatigue, frustration with getting the right treatment, and other challenges that come with “invisible” diseases.

Current treatments don’t work for everyone living with AIH. Clinical trials are researching potential new treatment and intervention options, and need volunteers to take part. If you're interested, start your trial search below by answering a few questions to find opportunities near you.