Explanation

Etanercept (also called Enbrel) is used to treat juvenile onset arthritis (JOA) in kids aged over 4 years. Your doctor will usually give you etanercept if you have already tried methotrexate or other medicines that haven't worked.

What does etanercept do?

Etanercept reduces inflammation in JOA and other inflammatoryconditions by blocking the chemicals in your body that cause inflammation when they are released.

What does it look like?

The type of etanercept you get from your doctor will depend on how much you weigh and how bad your JOA is. It comes either as:

a white powder and a clear liquid that you will have to mix together or

as a pre-filled pen (but you usually only have this if you weigh over 9st 12 lb/62.5kg)

Both types of etanercept are made for injections that are given just under your skin, and should have no colour or be pale yellow when they are ready to be used (when they are mixed).

When do I have to take it?

Your doctor will tell you how often you will need to take your etanercept, but usually it will be twice a week with 3-4 days between each injection.

To help you remember, you may want to write the day of the week you need to use it in a diary or on a calendar. You should also make sure that the adults looking after you know when you need to have it, so they can remind you to take it and help you if you need them to.

How do I take it?

You will have to mix the powder and the liquid together if you do not have the pre-filled syringes. Your doctor or nurse will show you how to do this the first time and then you can do it at home. If you can't remember how to do it, or if you are having trouble, call your doctor and ask for help, or ask an adult who is looking after you to help you.

You should remember to do the injections in either:

the front of your thighs, in the middle

your tummy, but at least 2 inches/5 cm away from your belly button

your upper arms. If you are injecting yourself, you should choose another area

Remember the needle is meant to go just under your skin, so be very careful not to put it in your muscle. To make it easier you might want to pinch your skin out and inject the skin you are holding.

It's important that you do not give yourself the injection in the same place each time. A good idea is to make a note of where you inject, so that you can make sure you use a different place next time. Also, don't inject an area where your skin is tender, bruised, red or has scars. You may want to get your parents or the adult looking after you to help you.

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

It's important that you keep taking your etanercept for as long as your doctor has told you to. If you feel that you don't want to keep taking it for some reason, you should talk to your doctor, but don't just stop taking it!

What should I do if I forget to take it?

Try and take your etanercept when your doctor told you to. Even if the adults looking after you forget - go and remind them! If you do forget to take your injection, then don't worry. Just take the next dose at the usual time unless your next dose is the next day. If this happens, you should just skip the missed injection and have your next one like normal. If you remember on the day your next injection is due, then don't take twice as much to try and make up for your missed dose - remember the three Ds: DON"T DOUBLE DOSE!

To make sure you don't forget, try writing the days on which you should have your etanercept injection in a diary or calendar.

How much do I take?

This depends on how much you weigh and how bad your JOA is. Your doctor will let you know exactly how much you need to inject and how to do it.

What are the most likely side effects I might get if I take etanercept?

When you take etanercept you may get side effects, although not everybody gets them. You could be allergic to etanercept. If so, you should stop injecting it and tell your doctor straight away. The signs of this to look out for are:

Trouble swallowing or breathing

Swelling of your face, throat, hands, or feet

Feeling nervous or anxious, throbbing sensations, sudden reddening of your skin and/or a warm feeling

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

You should tell your doctor if you notice any other side effects. These can include:

Colds or Skin infections

Bleeding, bruising, redness, itching, pain and/or swelling where you give the injection

What other side effects might I get?

The other side effects that can happen after taking etanercept are very unusual, so you're probably not likely to get them. Some of these can be serious though, so it's important for you and the adult looking after you to look out for them, just in case.

Tell your doctor or hospital straight away if you notice:

signs of serious infections, like high fever, cough, shortness of breath, chills, weakness, or a hot, red, tender, sore area on your skin or joints.

bleeding, bruising, or paleness

numbness or tingling, changes in your vision, sore eyes, weakness in your arms or legs.

Is it safe for me to be taking etanercept?

Before you start taking etanercept you should tell your doctor about any medical problems you know you have, including any allergies, or if you have had any serious problems in the past. It's dangerous to start etanercept if you have any infections, so if you have one, you should tell your doctor about it, even if it doesn't seem serious. Also, if you have ever been in contact with anyone with tuberculosis (TB) make sure you tell your doctor, even if you've never had it yourself.

It's also very dangerous to have vaccinations while you are taking etanercept, so you must remember to tell your doctor or nurse all the medicines you are on if you are due to have a vaccine. Check with the adult looking after you that you have had all the vaccines you should, because it's best to have them all before starting etanercept.

You must also tell your doctor if you have been near anybody who has chicken pox while you are taking etanercept.

Is it okay for me to be taking etanercept if I'm already taking other medicines?

Let your doctor know if you are 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 for you to tell him or her if you are taking any medicines that contain anakinra or abatacept. Both of these medicines are usually used to treat rheumatoid arthritis.

Do I need to know anything else about etanercept?

A few things to remember are:

keep your etanercept in the fridge (but not the freezer!)

if you use the pre-filled syringes, keep them in the outer carton so they are away from light

when you take the pre-filled syringe out of the fridge wait 15-30 minutes for it to warm up to room temperature, but DON'T heat it up any other way

Check that the liquid is clear, has no colour or is pale yellow, and doesn't have any lumps in it. If it is not, then DON'T use it!

Be very careful when you are throwing away needles and any medicine. You CAN'T put them in the bin or down the sink. The doctor may give you a special tub for your needles, which you will need to return. Ask your doctor about this if you are not sure what to do.

What if I have any more questions?

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