information for parents and carers

Etanercept for juvenile idiopathic arthritis

This leaflet is for parents and carers about how to use this When should the medicine start working?
medicine in children. Our information sometimes differs from Your child should start to have less pain and inflammation
that provided by the manufacturers, because their information when they have been taking etanercept for 2–12 weeks. Your
is usually aimed at adults. Please read this leaflet carefully. doctor will decide whether it is working once your child has
Keep it somewhere safe so that you can read it again. been taking it for a few weeks. It is therefore important that
you continue to give it as your doctor has told you to.

Do not stop giving etanercept suddenly, as your child What if my child is sick (vomits)?
may have a seizure (convulsion or fit). You do not need to worry if your child is sick, as the medicine
will still work.
Name of drug What if I forget to give it?
Etanercept Do the missed injection as soon as you remember, unless
Brand name: Enbrel this is the day before the next dose is due, in which case do
not give the missed dose.
Why is it important to take this medicine?
Do not give more than one injection in a 24 hour period.
Etanercept helps to reduce the inflammation (swelling) and
pain in the joints of children with juvenile idiopathic arthritis What if I give too much?
(JIA). It is used if treatment with another drug has not worked
as well as it was hoped or it had bad side-effects. It may be dangerous to give too much etanercept.
Etanercept works by reducing levels of a protein called If you think you may have given your child too much
tumour necrosis factor (TNF). The amount of TNF in the etanercept, contact your doctor or local NHS services
blood can be too high in inflammatory conditions like JIA. (details at end of leaflet) or take your child to hospital.
Take the medicine container or packaging with you, even if it
What is etanercept available as? is empty. This will be useful to the doctor. Have the medicine
Subcutaneous injection: 25 mg or 50 mg pre-filled syringe. or packaging with you if you telephone for advice.
The medicines for injection contain sucrose.
Are there any possible side-effects?
When should I give etanercept? We use medicines to make our children better, but
Etanercept is usually given once or twice a week. Your sometimes they have other effects that we don’t want (side-
doctor will tell you which days to give the medicine. You can effects). If you are worried, contact your doctor.
write these days in your diary to remind you and so that you
Side-effects you must do something about
have a record of when you last gave it.

How much should I give? If your child is short of breath or is wheezing, or their
999
Your doctor will work out the amount of etanercept (the dose) face, lips or tongue start to swell, or they develop a rash,
that is right for your child. The dose will be shown on the they may be allergic to etanercept. Take your child to
medicine label. hospital or call an ambulance straight away.
Etanercept occasionally causes serious side-effects.
It is important that you follow your doctor’s
These are unlikely, but you should contact your doctor
instructions about how much to give.
straight away if your child has any of the following
How should I give it? symptoms:
Etanacerpt has to be given as an • Your child has a rash and is also generally unwell and
injection underneath the skin (this has a fever (high temperature above 38°C) with cough,
is called a subcutaneous injection). shortness of breath, chills, weakness or red, hot tender
Your doctor or nurse will show you areas over the skin or joints. This may indicate a serious
how to do this. Older children may infection.
be able to do this for themselves. • Your child is pale and seems to bruise more easily or
Injections are usually done in the bleeding doesn’t stop as quickly as you would expect.
top of the leg or the abdomen. It • Your child feels numbness, weakness or pins and
is best to inject the needle into a needles in their arms or legs, or there is a change in
slightly different area of skin each their vision or they have eye pain, or have a fit.
time, so that there is less chance of
bruising or a reaction to the injection.
Other side-effects you need to know about • Your child may have an increased risk of getting
• If your child has pain when they urinate (do a wee) or tuberculosis (TB). If your child loses weight, has a fever
any difficulty urinating, contact your doctor. (high temperature) or develops a cough that will not go
• Your child may get a skin infection, or develop psoriasis away, these could be symptoms of TB. If your child has
(red and white scaly patches on the skin) or blistering of had TB before starting the medicine your doctor will
the skin. If you are worried, contact your doctor. check them regularly to make sure it has not come back.
• Your child may develop itchiness or a rash. Try applying If your child is due to have a vaccination, tell your doctor
a moisturising cream or anti-itch cream. If this does not or nurse they are taking etanercept. Some vaccines
help, contact your doctor, in case your child is allergic to should not be given.
etanercept. • If you or your child want to stop this medicine, discuss
• Your child may have some swelling, bruising or pain this with your doctor. They will explain how to reduce
at the site of injection. This is usually worst in the first the dose bit by bit. Do not reduce the dose without
month of treatment. To help avoid this, do each injection discussing this with your doctor.
in a slightly different place. • If your child takes etanercept for a long time, there is a
• Your child may feel sick or be sick (vomit) or have some low risk of skin cancer. Tell your doctor if you notice any
stomach pain or diarrhoea. If this is still a problem after unusual spots or sore patches on your child’s skin.
2 weeks, contact your doctor.
General advice about medicines
• Your child may get headaches. • If you are not sure a medicine is working, contact your
There may, sometimes, be other side-effects that are not listed
doctor but continue to give the medicine as usual in
above. If you notice anything unusual and are concerned,
the meantime. Do not give extra doses, as you may do
contact your doctor. You can report any suspected side-effects
harm.
to a UK safety scheme at www.mhra.gov.uk/yellowcard.
More information on side-effects can be found in the following • Only give this medicine to your child. Never give it to
leaflet http://www.medicinesforchildren.org.uk/side-effects- anyone else, even if their condition appears to be the
childrens-medicines same, as this could do harm.
If you think someone else may have taken the medicine
Can other medicines be given at the same time as by accident, contact a doctor straight away.
etanercept? • Make sure that you always have enough medicine.
• You can give your child medicines that contain Order a new prescription at least 2 weeks before you
paracetamol or ibuprofen, unless your doctor has told will run out.
you not to. • Make sure that the medicine you have at home has
• Etanercept should not be taken with some medicines not reached the ‘best before’ or ‘use by’ date on the
that you get on prescription. Tell your doctor and packaging. Give old medicines to your pharmacist to
pharmacist about any other medicines your child is dispose of.
taking before giving etanercept. This includes herbal or
complementary medicines. Where should I keep this medicine?
• Keep the syringes in the container they came in and put
Is there anything else I need to know about this them in a fridge. Make sure that the liquid doesn’t freeze.
medicine? • Make sure that children cannot see or reach the
Do not suddenly stop giving etanercept to your child, as medicine or syringes.
your child may have a seizure (fit or convulsion).
• The used syringes should be thrown away into a sharps
• Your doctor will test your child’s blood regularly to check box. Your doctor or pharmacist will give you this and tell
that etanercept has not affected their blood. you how to use it.
• Etanercept affects your child’s immune system so
they may get more infections such as chest infections, Who to contact for more information
coughs and colds and they may take longer to fight Your doctor, pharmacist or nurse will be able to give you more
these off. Try to keep your child away from people with information about etanercept and about other medicines used
infections if you can, but they can still attend school and to treat JIA. You can also get useful information from:
nursery. England: NHS 111 - Tel 111 - www.nhs.uk
If your child comes into contact with anyone who has Scotland: NHS 24 - Tel 111 - www.nhs24.scot
measles, chickenpox (or shingles), contact your doctor Wales: NHS Direct - Tel 111 - www.111.wales.nhs.uk
straight away, as they may need special preventative Northern Ireland: NI Direct - www.nidirect.gov.uk
treatment. Children’s Chronic Arthritis Association
01905 745 595 - www.ccaa.org.uk

www.medicinesforchildren.org.uk

Version 1, February 2015. © NPPG, RCPCH and WellChild 2011, all rights reserved. Reviewed by: February 2018.
The primary source for the information in this leaflet is the British National Formulary for Children. For details on any other sources used for this leaflet, please contact us through
our website, www.medicinesforchildren.org.uk
We take great care to make sure that the information in this leaflet is correct and up-to-date. However, medicines can be used in different ways for different patients. It is
important that you ask the advice of your doctor or pharmacist if you are not sure about something. This leaflet is about the use of these medicines in the UK, and may not apply
to other countries. The Royal College of Paediatrics and Child Health (RCPCH), the Neonatal and Paediatric Pharmacists Group (NPPG), WellChild and the contributors and