What is Autoimmune Hepatitis?
Autoimmune Hepatitis, also known as AIH, is a chronic (condition that lasts longer than six months), usually lifelong liver condition. It is an autoimmune disorder; this means your body’s immune system (the body’s defence against illness) attacks your body’s own cells.
Autoimmune Hepatitis is uncommon. It is estimated that there are approximately 10,000 people living with AIH in the UK. Men and women can develop Autoimmune Hepatitis but it is 3 to 4 times more common in women. It can develop at any age, however, it is more commonly diagnosed in women around the age of 45. It can affect all ethnic groups.
Thirty to fifty percent of people diagnosed with Autoimmune Hepatitis have another autoimmune condition, such as thyroid disease, rheumatoid arthritis, ulcerative colitis or Type 1 diabetes.
Some medications can also trigger Autoimmune Hepatitis. However, the number of people who are affected in this way is extremely small compared with the numbers who benefit from them.
Symptoms of Autoimmune Hepatitis can range from none to mild to severe. It is common to have no symptoms at the beginning. Some people may not have symptoms when they are diagnosed but they may develop them later. Others develop symptoms quickly over a few days (acute hepatitis – an illness that develops quickly).
When symptoms do start to appear, they often start over weeks or months. The symptoms are often nonspecific and have many possible causes so your doctor may not immediately attribute your symptoms to liver disease. The most common symptoms of AIH are:
- feeling more tired than normal or becoming tired easily
- feeling generally unwell
- mild joint or muscle pains, usually these are worse in the morning
- low appetite (not feeling hungry) and weight loss
- feeling sick (nausea)
- itching (pruritus)
- skin rash
- excessive hair growth (usually in women)
- passing loose or more frequent bowel movements (diarrhoea)
- absent periods/menstruation cycle (amenorrhoea)
- tummy pain or bloating.
More severe symptoms, which usually occur late in the disease, may include:
- the build-up of fluid in the legs, feet and ankles (oedema)
- the build-up of fluid in the tummy (ascites)
- jaundice – a condition in which the whites of the eyes go yellow and, in more severe cases, the skin also turns yellow
- abnormal blood vessels on the skin
- dark urine (wee)
- pale and/or fatty floating stools (poo).
As many people have either no symptoms or symptoms that are common for many other conditions, in the early stages of Autoimmune Hepatitis it is often diagnosed by a medical professional either when you have had routine tests, or tests for an unrelated condition.
For those who have symptoms, diagnosis is usually made though a mixture of taking a careful medical history, performing a physical examination, a range of blood tests and a liver biopsy. A diagnosis of Autoimmune Hepatitis is usually made by looking at your test results and ruling out other causes of liver disease such as fatty liver disease or viral hepatitis.
For more detailed information on testing and diagnosis please see our publication below.
Once you have been diagnosed with Autoimmune Hepatitis, treatment is almost always needed. The type of treatment used is called immunosuppression (reducing how active your immune system is).This is done by using a combination of medications.
The main goal of treatment is to stop the liver inflammation by suppressing your immune system (make it less active) but this can also reduce the ability of your immune system to fight infection. Reducing the liver inflammation will improve your symptoms, improve your liver tests, reduce the degree of scarring and help prevent long term liver damage and liver failure. Once treatment has started it is long-term, for at least two years and it is usually lifelong. It may be possible to stop treatment in a few people with AIH, however this is not without risk as a relapse (becoming ill again) can occur and you may need further treatment.
Prednisolone is part of a group of medications called corticosteroids. Prednisolone is the main steroid used to treat Autoimmune Hepatitis; it can also be used to treat a number of other conditions that are linked to inflammation for example, ulcerative colitis (an inflammatory bowel disease) and rheumatoid arthritis (a disease that affects your joints). Prednisolone works by suppressing your immune system, helping to reduce the inflammation in the liver. Your doctor will tell you the dose (how much of the medication) you should take and when is best to take it (usually once a day, after breakfast). Most prednisolone tablets should be taken with food to protect your stomach (tummy) from any irritation. Some preparations have a special coating on them and can be taken just before, or after, food. Sometimes your doctor may prescribe the steroids in another form such as prednisone or budesonide.
It is usual to start with a higher dose and for this to then be reduced over time. Your doctor will aim to find the lowest dose you can take while still controlling the inflammation; this will be different from person to person.
Azathioprine is an immunosuppressant (a medication which reduces how active your immune system is). It is used to treat Autoimmune Hepatitis and other chronic inflammatory and autoimmune conditions. It is also used to help stop the body fighting (rejecting) a new organ after a transplant.
Azathioprine works by suppressing your immune system, similarly to prednisolone, thereby reducing inflammation and the symptoms it causes. Your doctor will prescribe a dose (tell you how much) of the medication for you to take; this will depend on your weight and condition. The tablets should be taken with plenty of water, after eating a meal or with a snack, to help stop you feeling sick.
You should continue to take all medications until your doctor tells you otherwise; stopping medication without talking to your doctor could cause a relapse in your condition (cause you to become ill again.
Other drugs to treat AIH
The inflammation can be controlled well in most people using a combination of steroids and azathioprine. Indeed in some people, the steroids can be stopped and azathioprine is enough to control the disease. However, some people cannot tolerate these drugs or they are not effective enough. There are other drugs that liver doctors will use but these too have side-effects.
There is a detailed section on treatments, side effects and key considerations in our publication below.
In some people, the symptoms, signs and tests show an overlap between AIH and other autoimmune conditions of the liver (especially conditions called Primary Sclerosing Cholangitis (PSC) and Primary Biliary Cholangitis (PBC)) and, in some people, the features of AIH may change over time to resemble these other conditions. This is known as an ‘overlap syndrome’ and your doctor may prescribe other medications.
Looking after yourself
Alcohol is a toxin processed by your liver and, as a result, it can be dangerous for anyone with liver problems. Check with your doctor whether it is safe for you to drink any alcohol and, if so, how much.
Smoking is dangerous to everyone’s health. Smoking can increase the severity of liver damage.
People with liver disease are more vulnerable to infection and to poor health overall, so smoking or exposure to passive smoking is not advisable. If you smoke, speak to your doctor about what help is available with cutting down and giving up.
Diet and exercise
Being overweight or obese can affect the progression, or treatment of your liver condition. If you have a liver condition, there may be some special considerations you need to make in your diet to stay nutritionally well and to help manage your condition. Some of these are specific to certain liver diseases, others relate to how advanced your liver condition is (see our ‘Diet and liver disease’ section).
It is important that while you are taking prednisolone you avoid liquorice or products containing liquorice as it can interact with your treatment.
Complementary and alternative medicines and therapies
Many complementary and alternative medicines available suggest they can ease the symptoms of liver disease. As with any other medicine, you should use them with care; before taking any medicine you should check with your doctor that it is safe to do so.
Most medicines are processed by the liver so they can be toxic to people with liver problems. Some can damage the liver and make you more severely ill. At present, healthcare professionals are not clear on the role and place of some complementary medicines in managing liver disease; more research is needed on their use.
Licensing has been introduced for some traditional herbal medicines. However, many herbal products are not classified as a medicine and can be legally sold as food or cosmetic. This means there is no regulation of these products and so you cannot be sure how much of the active ingredient(s) that you are getting, or how pure it is. Unregulated products are not monitored or assessed for how effective or safe they are. Some remedies can damage the liver and make you more severely ill. It is wise to be cautious about the claims made about herbal remedies, particularly those advertised on the internet.
It is very important to discuss the use of these remedies with your doctor before considering taking them.
Please visit the support section of our website for information on Support groups in your area or visit our Useful Links section for other organisations who may be able to offer information and support.
Download: Autoimmune Hepatitis AIH0417.pdf
The Trust has been donated the use of the following video discussing the physiology of Autoimmune Hepatitis. It is aimed at medical students but after asking for feedback, some patients have also said they find it useful. It can be quite technical, so please discuss any content that you are unsure about with your medical team.