What is Auto immune Hepatitis (AIH?) – (inflammation of the liver)
Autoimmune hepatitis (AIH) is an autoimmune condition. This means your body’s own immune system (defence against illness) attacks your own cells and body organs. AIH is classified as a chronic condition which usually lasts longer than six months and is usually a lifelong condition. AIH can occur in all people at all ages, but the condition and treatments vary between adults and children. This leaflet is primarily aimed at adults. AIH if left untreated is a serious condition which could worsen over time. If it is not treated it can lead to fibrosis (scarring), cirrhosis (advanced scarring) and eventually liver failure and liver cancer. However with treatment the outlook is very good.
Your body’s immune system protects you against infection from bacteria and /or viruses. This happens because you have special cells known as lymphocytes which help kill off bacteria or viruses, these lymphocytes create antibodies which help kill off any foreign cells in the body. In some autoimmune conditions your body makes antibodies which damage your own body’s cells and body organs.
In AIH most of the damage is caused by blood cells called lymphocytes. The lymphocytes attack your normal liver cells causing your liver to become inflamed which can lead to damage and liver swelling and tenderness.
Will I experience any symptoms?
The symptoms experienced vary from person to person and can range from none to mild to severe. On initial diagnosis it is possible not to experience any symptoms, but symptoms could develop later, or symptoms could develop very quickly over a few days. Some symptoms you may experience are, fatigue (extreme tiredness), joint and muscle pain, skin rashes, nausea, feeling generally unwell, reduced appetite, abdominal pain, feelings of being bloated and more frequent bowel movements (diarrhoea).
How is AIH diagnosed?
AIH can sometimes be diagnosed if you are experiencing no symptoms, but you have routine tests for an unrelated condition. AIH is usually confirmed after taking a detailed history and examination from you alongside specific blood tests, and a liver biopsy (if a liver biopsy is requested you will receive a specific information leaflet detailing the procedure and what to expect). You may also require an abdominal ultra sound scan and fibro scan as both of these investigations will also inform the level of scarring if any to your liver as a result of inflammation.
What are the benefits of the treatment?
Once you have been diagnosed with AIH treatment is always needed. The type of treatment used to treat AIH is called immunosuppression (reducing the activity of your immune system). This is done usually by a combination of medication that will stop the liver inflammation by making your immune system less active. Once your liver inflammation has reduced your symptoms if you are experiencing any will improve. Once treatment commences it is a long term treatment for at least two years but it could be lifelong. Treatment can be stopped in certain situations but there is a risk of relapse and you would then require further treatment.
Looking after yourself
Alcohol
Alcohol can be consumed but you must adhere to safe alcohol levels of 14 units or less per week. If you have liver cirrhosis or advanced scarring of your liver we advise abstinence from alcohol.
Diet and Exercise
There are no specific dietary or exercise requirements but maintaining a well-balanced healthy diet and adhering to regular exercise daily is essential to overall wellbeing and is recommended. To eat healthily you need to get the right balance between different foods. For most people, a well-balanced diet is one that is low in fat, sugar and salt and high in fibre. Your diet should also contain enough protein and a wide range of vitamins and minerals. It is important to remember that your body’s nutritional needs may vary depending on the type and severity of your condition. Particularly, if you are unwell and losing weight you may need to vary your diet.
Will I need follow up appointments
You will require regular follow up, after initial diagnosis you will be monitored very closely and will be seen every 2-4 weeks until your blood results show that the inflammation of your liver is improving, your appointments will then be less frequent, but you will always be seen by either your consultant or nurse every six months. Your appointments will be a mix of telephone and face to face appointments.
What will happen if I do not attend an appointment/ telephone consultation?
If you do not attend your outpatient/telephone appointment you may be offered an alternative appointment or referred back to your GP and he will discuss with you whether you want to engage with the hospital for further appointments or if you would rather be followed up by your GP.
If I have any questions, who should I contact for advice?
You could contact one of the liver nurses via our hospital switchboard telephone 0191 482 0000 Mon to Fri 8:30 am until 4:30 pm, alternatively you could speak to your consultant’s secretary or seek the advice of your GP. Out of hours if you need to talk to someone about your appointment or any other issue which could not wait until the next working day during office hours you could speak to the senior nurse by contacting the hospital switchboard and requesting you speak to the senior nurse.
If you require more information about AIH please go to www.britishlivertrust.org.uk or www.livernorth.org.uk
How to contact us?
If you need more advice or would just like to have a chat about your condition, please contact the liver nursing team via the hospital switchboard on Tel 0191 482 0000, or ring them on their direct help line 0191 4453935.