Explanation

Canakinumab (also called Ilaris®) is a type of medicine called a monoclonal antibody. It's used to treat cryopyrin-associated periodic syndromes (CAPS) including Familial Cold Autoinflammatory Syndrome (FCAS) and Muckle-Wells Syndrome (MWS).

What does canakinumab do?

Canakinumab works by hunting down and then sticking to a chemical that causes inflammation in your body. This makes some types of inflammation in your body less likely to happen.

What does canakinumab look like?

Canakinumab is a liquid that is injected just under your skin.

When do I have to have my canakinumab and how much do I have?

Your doctor will give you your canakinumab injections when you need them. You will usually need to go to the hospital or your doctor's office every 8 weeks to have them. Your doctor will decide what dose of canakinumab you need.

But what if I don't feel like having my canakinumab?

It's important to have your canakinumab injection even if you're feeling better or don't feel like going to the doctor for them. They will help to keep the symptoms of your CAPS under control.

What should I do if I forget to have my canakinumab?

Your doctor will arrange appointments with you to have your canakinumab injections when you are meant to. If you forget to go for an injections, tell your doctor or the person who looks after you straight away so that you can arrange to have it another time. It's important that you make a new appointment as soon as possible.

What if I have too much canakinumab?

Your doctor will give you your injection of canakinumab so he or she will make sure you get the right amount.

What are the most likely side effects I might get if I'm receiving canakinumab?

When you take canakinumab you may get side effects, although not everybody gets them. You could get an allergic reaction when you have canakinumab. If you do, you should go to the hospital emergency department straight away and then let your doctor know so that you don't have more injections. The signs of this to look out for are:

trouble swallowing or breathing

swelling of your face, throat, hands, or feet

a bad rash, itching, or hives (bumpy patches of red or pale skin that are itchy)

The side effects you are most likely to get from canakinumab are:

cold symptoms like a runny or blocked nose, cough or sore throat

diarrhoea (runny poo)

flu (the flu)

runny nose

nausea (feeling sick)

headaches

redness, swelling, warmth and/or itching where you have the injection

Are there any other possible side effects from canakinumab?

Canakinumab can cause other serious like serious infection, immunosuppression (decreasing your body's ability to fight infections) and vertigo (feeling like you are spinning). You should tell your doctor if you notice any of these.

You should also call your doctor straight away if you have any of these signs of an infection:

redness in one part of your body

warm feeling or swelling in your skin

a fever lasting longer than 3 days

a cough that does not go away

Is it safe for me to be having canakinumab?

Before you have a canakinumab, you should tell your doctor about any medical problems you know you have or have had in the past, including any allergies. This is especially important if you have a bad infection that isn't getting better or keeps coming back. You should tell your doctor each time you go to have your injection if you have or have had an infection.

Is it OK for me to be given canakinumab if I'm already taking other medicines?

Let your doctor know if you're taking, or have recently taken, any other medicines, even herbal medicines or ones you got from the pharmacy without a prescription. It's especially important to tell your doctor if you are taking any of the medicines below:

medicines that affect your immune system

interleukin - 1 (IL-1) blocking agents like anakinra or rilonacept

Tumor Necrosis Factor (TNF) inhibitors like etanercept, adalimumab or infliximab

medicines that can affect enzymes in your body

It can be dangerous to have some types of vaccines when you are being treated with canakinumab. You should talk to your doctor before having any vaccinations to check if it's safe.

Is there anything else I need to know about canakinumab?

Canakinumab contains sucrose, so if you have been told that your body does not cope well with any type of sugar make sure you talk to your doctor before starting treatment.

What if I have any more questions about canakinumab?

If you have any other questions, you can ask your doctor, or you can join the Medikidz forums and talk to other people with CAPS.