How long does treatment continue for?

The length of treatment will vary from child to child. It will also depend on:

• the type of autoimmune liver disease
• the response to treatment
• whether the disease gets worse again (relapses)

Treatment is likely to last for several years, and often longer (sometimes for life). Treatment will only be reduced or stopped if symptoms improve or go away for enough time. This is called remission. It will only be considered after at least two to three years of treatment. The medical team will also want to see completely normal blood tests during the last year. Your child will also need a repeat liver biopsy. This is used to check that the inflammation in the liver has disappeared.

If the decision to stop treatment is made, the dose is decreased very slowly. This is because liver tests can get worse again if:

• doses are reduced too quickly
• medicines are stopped suddenly

Symptoms may also come back. If this happens, your child will need to re-start treatment at a higher dose.

Back to top

Around 1 in 5 children with type 1 AIH can eventually stop treatment.

Very few children with type 2 AIH can ever stop treatment. Relapse is common in type 2.

Staying healthy on immunosuppressants

Immunosuppressants affect the way your child’s immune system works. This means they may be more at risk of infections.

Here is some advice to help your child stay healthy when taking these medicines:

Avoid anyone who has or may have:

• measles
• shingles
• chickenpox
• flu
• COVID
• respiratory syncytial virus (RSV)

If your child becomes ill, make a doctor’s appointment as soon as possible.

Protect skin from strong sun and use at least SPF30 sunscreen. This is because immunosuppressants can slightly increase the risk of developing skin cancer and some other cancers.

Your child may not be able to have ‘live’ vaccines during treatment. They may also need to avoid live vaccines for 3-6 months after finishing treatment. The medical team will make sure your child’s vaccinations are up-to-date before
starting immunosuppressants. Your child may also need extra vaccinations including:

• flu vaccine
• COVID vaccine
• pneumococcal vaccine

Other tips for staying healthy on immunosuppressants:

• taking prednisolone in the morning can help with problems sleeping
• reduce salt intake and drink more water
• get plenty of sleep

Weight gain can be a distressing side effect for children and young people. Help your child eat well without increasing portion sizes. Regular exercise will also help your child keep their weight stable.

Back to top

What is a relapse and how is it managed?

A relapse is when the disease becomes active again after a period of remission. Relapses can happen suddenly, at any point. But they are most likely to happen during the first two years of treatment. They are also more common during puberty.

Relapse happens in around 2 out of every 5 children.

A relapse is usually picked up on routine blood tests. Or it may be noticed due to symptoms starting again. A relapse can also happen if medicines are not taken as prescribed. This is called non-adherence. It is crucial that children and young people understand the importance of taking their medicine. There are usually no symptoms at the start of a relapse. This may give the false impression that it is safe not to take the medicine.

When a relapse happens, the dose of medicine will need to be increased. The aim is to try and bring the disease back under control.

Back to top