Autoimmune hepatitis: symptoms, treatment and causes

Liver UK says nearly a quarter of people with autoimmune hepatitis will have no symptoms, or may get symptoms only after they have been diagnosed. For some people symptoms develop quickly over a few days (acute hepatitis). Symptoms can be vague and are shared with many other conditions.

• An overwhelming sense of tiredness (fatigue) and feeling generally unwell.

• Itching.

• Yellowing of the skin and whites of the eyes (jaundice), which may come with darker urine.

• An aching feeling or discomfort on the upper right side of the tummy, where the liver is.

• Losing weight for no reason, little or no appetite and feeling sick.

• Joint or muscle pain, skin rash, flu-like symptoms and missed periods.

Liver UK says that if the liver struggles to work, more serious symptoms can develop, and that if you have any of the following you should tell a doctor straight away. For yellowing of the skin or eyes, the NHS says to ask for an urgent GP appointment or get help from NHS 111, because jaundice can be a sign of something serious such as liver disease. It says you may also have itchy skin, darker pee and paler poo than usual.

• Yellowing of the skin and whites of the eyes (jaundice).

• Swelling in the legs, ankles and feet caused by a build-up of fluid (oedema).

• Swelling in the tummy caused by a build-up of fluid (ascites).

• Periods of confusion, forgetting things, mood changes or poor judgement (hepatic encephalopathy).

• A tendency to bleed and bruise more easily, such as frequent nosebleeds and bleeding gums.

Hepatitis is the medical term for inflammation of the liver. Liver UK explains that in autoimmune hepatitis the immune system, which normally protects you from infection, makes autoantibodies that make T cells attack your own healthy liver cells. This damages the liver and causes inflammation. People with AIH usually have more immunoglobulin G (IgG) in the blood.

If it is left untreated, Liver UK says autoimmune hepatitis can lead to serious scarring of the liver (cirrhosis), which can then lead to liver cancer or liver failure. About 1 in 3 people with autoimmune hepatitis have cirrhosis when they are diagnosed.

Some people have autoimmune hepatitis together with another liver disease, called an overlap syndrome. Liver UK names primary biliary cholangitis (PBC), primary sclerosing cholangitis (PSC) and metabolic dysfunction-associated steatotic liver disease (MASLD).

Liver UK says most people with autoimmune hepatitis need treatment, called immunosuppression, which reduces how active the immune system is. This stops it attacking the liver and reduces inflammation. The main aims are to improve symptoms and blood tests, and to prevent or reduce scarring and long-term liver damage and failure. You are likely to take medicines for at least two years, and for many people this could be for life.

Your care is managed by a hepatologist or gastroenterologist, and you may be supported by a liver nurse specialist. A shared care agreement can let your GP continue medicine that the hospital has started. Liver UK says a liver transplant could be life-saving if the liver is very badly damaged, but is usually only recommended if other treatments are no longer helpful.

Liver UK says it is not entirely clear what causes autoimmune hepatitis and it is not known whether anything can be done to prevent it. It is thought to be a combination of three things.

• Autoimmunity: the immune system makes autoantibodies that attack and damage the body's own cells and organs.

• Genetics: it can run in families, which may make it easier for a trigger to set it off.

• External triggers: causes outside the body, such as getting a virus or taking certain medicines.

No. Liver UK says you cannot catch autoimmune hepatitis and it is not related to drinking alcohol. Some people think it is the same as other types of hepatitis, such as alcohol-related hepatitis or viral hepatitis, but it is a different condition, in which the immune system rather than a virus or alcohol damages the liver.

Liver UK says you may find out you have it during tests for other health problems. If your GP suspects autoimmune hepatitis they will do blood tests and then refer you to a liver specialist, either a hepatologist or a gastroenterologist.

Tests usually include liver blood tests (higher ALT and AST), blood tests for autoantibodies (such as ANA and ASMA) and IgG, and scans such as ultrasound, FibroScan, CT or MRI. Liver UK says blood tests and scans are not usually enough to make a diagnosis and most people also need a liver biopsy, which can check for inflammation and scarring. If you have cirrhosis you will be offered a check-up every six months, with surveillance for liver cancer and possibly an endoscopy.

Liver UK says regular appointments let your liver specialist check ALT, AST and IgG levels to see how well you are responding. The aim is to normalise these tests and reduce symptoms while keeping doses of medicine as low as possible.

A flare can happen when you are not responding well enough to treatment, or if treatment has been stopped after remission, which is called relapse. About 7 in 10 people who go into remission and stop treatment relapse within a year, and relapse means starting treatment again. For some people treatment can be stopped if signs and symptoms improve a lot, and you may be offered a liver biopsy first to check it is safe.

Liver UK says people on immunosuppressants are at higher risk from COVID-19 and are eligible for antiviral treatment. It recommends talking to your GP about mental health support if living with liver disease feels hard.

Liver UK says many people with AIH get pregnant and have children. It is a good idea to talk to your clinical team first so they can advise you, and to tell them as soon as possible if you become pregnant, so they can monitor you during pregnancy and after delivery. Do not stop your treatment while pregnant without speaking to your clinical team, and talk to them in advance if you take mycophenolate mofetil because it has been linked to pregnancy problems.

There is no special diet for autoimmune hepatitis, according to Liver UK, although the main medicines can interact with certain foods. It recommends a healthy balanced diet, keeping a healthy weight (weight gain is a side effect of steroids), regular physical activity and, if you have cirrhosis, following special nutrition advice.

On the NHS, a GP arranges blood tests and refers you to a hepatologist or gastroenterologist for scans and, usually, a liver biopsy. Liver UK notes that you have the right to choose which hospital your doctor refers you to.

Some people see a private liver specialist for faster access to tests. The medicines are the same in either setting. As treatment is long term, ask who will do the monitoring blood tests, and make sure your GP is kept informed so that shared care agreements and prescriptions run smoothly.