You are likely to take medicines for at least two years.
For many people this could be for life. It might be possible to stop treatment completely, but some people can become ill again (relapse) and need further treatment.
These decisions should be made carefully between you and your clinical team. If your treatment changes, or is stopped completely, you will be checked more closely.
You have the right to choose which hospital your doctor refers you to. You can find a list of hospitals with specialist liver departments here, to help you find one near you. Your care will be managed by a hepatologist or a gastroenterologist. Speak to your clinical team about whether you can be supported by a liver nurse specialist.
Your liver specialist or doctor might talk to you about a ‘shared care agreement’ when you have been prescribed medicine to control your condition. This means that the medicine the hospital has started can be continued by your GP, so you will not have to visit the hospital to collect your medicine. There might be certain medicines that can only be prescribed by a hospital.
If your liver is very badly damaged, a liver transplant could be life-saving. It is usually only recommended if other treatments are no longer helpful, and your life is threatened by end stage liver disease. Read or download more information about liver transplants here.
Corticosteroids are a type of steroid, used to reduce inflammation in the liver.
They are also an immunosuppressant. They are different from anabolic steroids, used by some people to increase their muscle mass.
Common types of corticosteroids are prednisolone and budesonide. Prednisolone is the main steroid used to treat autoimmune hepatitis.
If you have jaundice when you are diagnosed, you will usually only have corticosteroids. When your symptoms improve, you will also start taking an immunosuppressant.
When you take prednisolone (or other steroids) for more than three weeks, you should have a steroid treatment card. Carry it with you and keep it up to date. You will need it in an emergency, or if you are having any medical or dental treatment. These days, it might also be helpful to take a photo of it on your phone.
Do not eat liquorice or products containing glycyrrhizin (liquorice extract) when you are taking prednisolone. This might increase the amount of the steroids in your body and your side effects.
Prednisolone comes in tablets. Take it with food to help reduce tummy problems.
How much medicine you need (the dose) will be different for each person. Your liver specialist will adjust the dose at first, to get it right for you. Generally:
- To quickly reduce inflammation, you will start with a higher dose and gradually reduce this over time
- Once the inflammation is under control, you might stop taking steroids completely and continue with a long-term immune suppressant to stop your condition getting worse (flaring)
- Some people might need to continue taking a low dose of steroids to control their inflammation. If this is the case, your liver specialist will find the lowest dose possible.
If you have had symptoms, these can improve within days. For some people it can take longer.
Steroids can interact with other medicines. Let your liver specialist know about all the medicines you are taking.
Some side effects can happen straight away. Others can happen after weeks or months. If you tell your clinical team they can sometimes help by changing your treatment. Common side effects include:
Prednisolone can make you hungrier, and also can make you hold more water in your body (water retention). Try to eat well without increasing your portion sizes. Regular exercise will also help to keep your weight stable. When you stop taking prednisolone, your appetite and the way your body holds water should return to normal.
A common side-effect of taking prednisolone over a long period of time can be “moon face”. You can help the swelling around your face by reducing your salt intake, drinking more water and getting enough sleep. Your doctor might be able to help you reduce your medicine (tapering) or stop taking it.
Take prednisolone with food to reduce the chances of tummy problems. It may also help if you avoid rich or spicy food while you are taking it. If symptoms continue, ask your doctor or liver specialist about taking another medicine to protect your tummy.
Problems sleeping (insomnia) or feeling restless
Take prednisolone in the morning so levels are lowest at bedtime.
A small number of people have more serious side effects. You might also have withdrawal symptoms if your dose is reduced or you stop taking prednisolone.
Tell your doctor if you feel unwell or if you notice anything unusual about your health.
Taking steroids over a long period of time can affect your health in several ways. Your doctor will check for and treat any problems. For example:
- Offer you a bone density scan (DEXA scan) every 1 to 2 years to check your bones aren’t thinning (osteoporosis)
- Prescribe calcium and vitamin D supplements to help your bones stay strong
- Do tests for high blood pressure and diabetes, which can both be treated
Budesonide is sometimes used as an alternative to prednisolone. You will usually take it one to three times a day, depending on your dose, type of medicine, and brand.
Common side effects can include:
- Tummy pain or indigestion
- Muscle pain
- Skin reactions
- Mouth thrush (oral thrush).
Taking budesonide tablets, capsules or granules can mean you are more likely to get infections.
Do not eat grapefruit or drink grapefruit juice while you are taking budesonide, as it can increase the levels in the blood and the chance of side effects.
The most common immunosuppressant used with corticosteroids is azathioprine.
- Moderate how active your immune system is
- Help prevent inflammation and cell damage
- Reduce your symptoms
Mercaptopurine (6MP), mycophenolate mofetil (MMF) and tacrolimus (TAC) are other types of immunosuppressant. They can be used instead of azathioprine. For example, when you have serious side effects or when your autoimmune hepatitis has not responded to azathioprine.
Immunosuppressants can interact with other medicines. Let your liver specialist know about all the medicines you are taking.
Azathioprine usually comes as tablets. Take it with plenty of water, after eating a meal or with a snack, to help reduce tummy problems.
Doses will vary and could change during the course of your treatment. It will depend on your weight and how serious your autoimmune hepatitis is.
The length of treatment depends on each person. It is likely to be for several years, and longer (sometimes for life). For some people treatment can be stopped if your signs and symptoms improve a lot or go away (remission). In this case, you might be offered a liver biopsy to check it is safe to stop taking the medicine.
This type of medicine can act slowly, so it may be up to three months before you feel any benefits.
Do not drink milk or eat dairy products at the same time as taking your azathioprine tablets. Dairy products contain an enzyme which can break down the medicine, making your treatment less effective. Take your medicine at least one hour before, or two hours after, having milk or dairy products.
You are more likely to experience side effects when you first start taking azathioprine or when your dose is increased. You will usually feel better within a month or so. Common side effects include:
Fatigue is a common symptom of having autoimmune hepatitis. It is also a common side effect of taking azathioprine. This will improve as the inflammation in the liver
improves. Eating well, being physically active and getting enough sleep can help.
Stick to simple meals and do not eat rich or spicy food. It might help to take azathioprine after you have eaten. If you keep feeling sick after a couple of weeks speak to your clinical team. Your medication could be changed to mercaptopurine.
If you are struggling with other side effects or they are not going away, speak to your doctor, liver specialist or specialist nurse. They can sometimes adjust your treatment to help.
- You will be at higher risk from COVID-19, so you are eligible for antiviral treatment. This will stop you getting severe symptoms and will also reduce the risk of you needing to go to hospital. Keep some NHS COVID-19 tests at home, as you will need to test and confirm you have the virus to apply for treatment.
- There is a slightly increased risk of developing some cancers. It is important to reduce the risk of skin cancer by not using sunbeds and protecting your skin from strong sun with clothes, hat, and sunscreen with at least SPF30. It is also a good idea to take part in cancer screening when you are invited. Especially screening for cervical cancer as it is caused by a virus.
- It is important to avoid anyone who has or may have measles, shingles or chickenpox. If you become ill, you should make an appointment to see your doctor as soon as possible.
- Do not take ‘live’ vaccines while taking these medicines, and for three to six months after you stop treatment. If you are living with anyone planning to have one, ask your GP whether it is safe.
If you have liver disease you are more vulnerable to infections. And if you do get ill, you are more likely to become severely ill. It is important to have your
Hepatitis A and B, flu and COVID-19 vaccinations.
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Published: June 2023
Review Due: June 2026