Etanercept for children and young people

JIA artwork

Picture by Isabella Mortlock, age 5

Biologic drugs explained

Etanercept is a ‘biologic’ drug. Biologic drugs are often referred to as ‘targeted therapies’ because they work on specific cells of the immune system. Etanercept works on the TNFα cells.

TNFα is an inflammatory chemical produced naturally as part of the immune system. In JIA, TNFα is present in excess in the lining of the joints causing pain, swelling, redness and heat, all of which are symptoms of inflammation.

Background

After development, etanercept was made available to control inflammatory arthritis in the late 1990s 

How long does etanercept take to work? 

Etanercept may take several weeks to be effective (2-12 weeks) 

When can etanercept be prescribed in JIA? 

Etanercept can only be prescribed for children and young people according to strict guidelines. When these guidelines are met, it may be prescribed together with methotrexate. When it has been established that methotrexate has not been effective in controlling the JIA, or that the child or young person has not been able to tolerate it for whatever reason, etanercept can be prescribed on its own. 

There will always be careful pre-treatment screening particularly to establish if there is any history of tuberculosis (as this can be re-activated by etanercept). A record is taken of the vaccinations completed and any other information the specialist team requires.

Whether you are a young person with JIA or the parent of a child with JIA it is important that you understand the intended treatment and any possible precautions.

The prescribing doctor will register the child/young person (with the consent of the parent(s) in the case of children) with the Biologics Registry of the British Society for Paediatric and Adolescent Rheumatology (BSPAR). This is a database that stores information on the use of biologic drugs and helps to increase the knowledge of these treatments. There is more confidence in the benefit of a treatment when increasing numbers of patients take it for increasing lengths of time without significant side effects.

How is etanercept given?

Etanercept is given as a subcutaneous (meaning ‘under the skin’ and often called ‘sub-cut’) injection with a pen device or syringe. This can be given once or twice a week, depending on your age. There are various ways that this can be organised. For example:

  • the parent(s) may be willing to learn to give the injection 
  • the child/young person may attend the local hospital or doctor’s surgery to have the injection 
  • a young person may be taught to inject themselves 

The management of this treatment is always discussed in detail at the start. Regular blood test monitoring is required; the frequency of which will depend on the prescribing specialist’s advice. 

The medicines may be supplied from your hospital pharmacy or delivered to you by a homecare company. 

Possible side effects 

As with any medication, etanercept has a number of possible side effects, although it is important to remember that these are only potential side effects. They may not occur at all. 

1. Infections 

Etanercept, like other biologic drugs, has been associated with an increased susceptibility to infections; sometimes these can be severe eg. re-activation of tuberculosis or milder infections such as skin infections. Due to the risk of infection, tattoos and body piercings are not recommended. 

2. Other possible side effects include: 

  • An increased risk of food poisoning caused by salmonella or listeria 
  • Pruritis (itching) and injection site reactions 
  • Nausea and tummy pain 
  • Hypersensitivity reactions such as rash, bronchospasm (mimicking asthma) and angioedema (swelling of lips, tongue, around the eyes) 
  • Fever, headache and depression 
  • Blood disorders 

More information on side effects can be found in the patient information leaflet for etanercept 

Remember to report any concerns about possible side effects to your doctor, or nurse

Etanercept with other medicines

There are currently no specific prescribed medicines to be avoided when taking etanercept, but remember to take care when using any other medications or complementary therapies (even if bought ‘over the counter’ for colds or flu). Remember to check with a doctor, nurse or pharmacist that they are safe to take with etanercept and any other medication taken.

Only one biologic drug is prescribed at any one time. Etanercept (a biologic drug) prescribed alongside methotrexate (a standard disease modifying anti-rheumatic drug, or DMARD) is a commonly used combination.

Etanercept and immunisation/vaccination

Live vaccines [measles, mumps, rubella (MMR), chickenpox, oral polio (NOT injectable polio), BCG, oral typhoid and yellow fever] cannot be given to anyone already taking etanercept . If etanercept has not yet been started it is important to seek advice on how long a gap to leave after having a live vaccine.

Flu vaccine is now available in two forms, an injection and a nasal spray. Unlike the injection, the nasal spray is a live vaccine. There is limited research evidence around live vaccines in people with a lowered immune system (due to their medication). It is therefore important to discuss with the healthcare team which of these options would be best.
Vaccination of close family members can help to protect someone with a lowered immune system.

Etanercept and pregnancy

There is not sufficient research information to give advice that either pregnancy or breast feeding is safe.

A man or a woman taking etanercept should use reliable contraception during treatment and for 3 weeks after the last dose before planning to start a family.

Remember to ask your doctor or clinical nurse specialist if you need any further advice.

Etanercept and alcohol

Alcohol can be consumed when taking etanercept. However, caution may be required when taking other medications alongside this drug, for example methotrexate. Please see our separate articles on other JIA medications.

Hints and Tips

The following hints and tips may be useful when taking etanercept 

  • Stay safe on etanercept by remembering to have regular blood test monitoring as advised by the consultant or clinical nurse specialist 
  • A single syringe or pen device should be removed from the fridge for 15-30 minutes before using, in order to bring it to room temperature, as this will help to avoid any stinging at the injection site 
  • To ease injection site reactions, choose alternate thighs for the injections and by differing the actual site around the mid thigh region 
  • An injection site reaction that includes a rash or redness can be eased with a cold compress 
  • Storage should be in a refrigerator (2°C – 8°C) and the syringes kept in the outer carton in order to protect them from light. Do not freeze 

How to travel 

  • Before travelling it is important to keep up to date with vaccinations 
  • Live vaccines (see above ‘Etanercept with other medicines’) must be avoided. It is important to check whether any required vaccines are ‘live’ before booking a holiday 
  • Etanercept can now be stored at room temperature (up to 25⁰C) for a single period of up to 4 weeks, which makes it easier to carry when travelling by air. It should not be refrigerated after this 
  • Both the company providing the medication and the airline can supply more information on travelling with etanercept 
  • Your healthcare team can provide you with a letter of authorisation to travel with this drug 

Table summary

Drug name How the drug is taken How it works Blood tests mandatory?
Etanercept (ETN) Syringe or pen Reduces over activity of the immune system by targeting TNFα cells Yes- every 3 months initially

References available on request

By retired rheumatology clinical nurse specialist Nicky Kennedy BSc RN QN HV

Original article: 02/10/2015
Reviewed: N/A
Next review due: 02/10/2018