Explanation

Infliximab (also called Remicade®) is a medicine that is used to treat Crohn's disease. In adults, it is also used to treat other illnesses that cause inflammation.

What does infliximab do?

Infliximab is an antibody that has been specially made to stick to a protein in your body called tumour necrosis factor. Tumour necrosis factor causes inflammation around your body. When infliximab sticks to it, it stops its activity, so the inflammation in your intestines caused by Crohn's disease is reduced.

What does it look like?

Your doctor will give you your infliximab in hospital.

Infliximab comes as a pellet of white powder. It is mixed with water and given to you through a tube that a doctor will put into a vein in one of your arms. This is called an intravenous drip.

When do I need to take it?

You will need to go into hospital to have your infliximab treatment.

How often you are treated depends on how ill you are and how much you weigh. Your doctor will decide the perfect dose for you. You will need to go to hospital for more doses of infliximab - one 2 weeks after and one 6 weeks after your first dose. If it works well, you may need to go for more treatment every 8 weeks.

It will probably take 2 hours for all of the infliximab to get through the tube and into your body each time you have it.

But what if I don't feel like taking it?

If you are having infliximab treatment, it's important that you keep going to hospital to have it for as long as your doctor tells you to, even if you don't feel like it. Infliximab will help control your Crohn's disease.

What should I do if I forget to have my infliximab treatment?

Going to have your infliximab treatment is important as it will help control your Crohn's disease.

Your parents or an adult who looks after you will help you arrange a time to go for treatment and help you get time off school if you need it.

What are the most likely side effects that I might get?

Not everyone gets side effects from infliximab treatment. You may have some side effects, or you may have none at all.

The most usual side effects are:

Headache

Feeling dizzy

Feeling sick

Sore tummy

An allergic reaction

Bumps on your skin or a skin rash

Cold sores or getting a virus

A cold or lung infections

If you notice these side effects, or any others, tell your doctor or an adult who looks after you immediately.

What other side effects might I get?

Other less likely side effects you could get while having infliximab treatment include:

Feeling sad or empty

Problems sleeping

Problems with injuries healing

Infections

Liver problems

Problems with your blood

Autoimmune diseases

Losing your hair

Anaphylaxis

Bleeding

Rash or swelling where the infliximab tube goes into your arm

If you notice these side effects, or any others, tell your doctor or an adult who looks after you immediately.

Are there any other side effects you haven't mentioned?

There are other side effects that you could get, but they are very unusual. They include bleeding in your gut, which can cause dark or bloody poo, and problems with your nerves, blood vessels and lymph glands

If you notice these side effects, or any others, tell your doctor or an adult who looks after you immediately.

Is it safe for me to be treated with infliximab?

Before you are treated with infliximab, tell your doctor about any other medical problems that you know you have. This is especially important if you know you are allergic to infliximab, have an infection, or have any heart problems.

You should also tell your doctor if you have any iver problems or any type of cancer.

Is it okay for me to be treated with infliximab if I am already taking other medicines?

You should tell your doctor about any other medicines that you are taking, or have taken, recently, including herbal medicines.

It's especially important to mention if you are taking:

Methotrexate or other medicines that affect your immune system

Also, before having any vaccinations, you should make sure you tell your doctor that you are being treated with infliximab.

Is there anything else I should know about infliximab?

While you are being treated with infliximab, your doctor will give you blood tests to check for any problems with your liver or blood.

What if I have any more questions?

If you have any other questions, you can ask your doctor, or chat to other people with Crohn's disease in the Medikidz forums and virtual world, Mediland.