Tocilizumab for children and young people

JIA artwork

Picture by Timothy Corfield, age 12

Biologic drugs explained

Tocilizumab is a ‘biologic’ drug. Biologic drugs are often referred to as ‘targeted therapies’ because they work on specific cells of the immune system. Tocilizumab works on the inflammatory chemical Interleukin-6 (IL-6).

Interleukin-6 occurs naturally as part of the immune system. In systemic JIA and polyarticular JIA too much IL-6 is produced and causes symptoms of inflammation in the body (signs of which include pain, heat, swelling and redness in joints). This overproduction needs to be controlled to prevent damage to the joints and other unwanted effects.

Background 

Tocilizumab has been recommended by NICE (National Institute for Clinical Excellence) since 2011 for children and young people and has been developed to control the overproduction of the inflammatory chemical interleukin-6 (IL-6). It is used, for those who have failed previous treatments or been intolerant to them, as a single treatment or in combination with methotrexate. 

There has been extensive research into the use of tocilizumab for the treatment of inflammatory arthritis over many years. This research has helped to shape the role for this drug in the treatment of systemic onset JIA. 

How does Tocilizumab work? 

  • Tocilizumab is a targeted biologic drug (meaning it works on specific cells) and is licensed for children over 2 years 
  • Tocilizumab may take several weeks to be effective (2-12 weeks). 

When can tocilizumab be prescribed? 

Tocilizumab can only be prescribed for children and young people according to strict guidelines; 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, tocilizumab will be prescribed on its own. 

There must be careful pre-treatment screening, particularly to establish if there is any history of tuberculosis (which could be reactivated by this drug); to record vaccinations that have been completed and any other information the prescribing specialist may require.

Whether you are a young person or the parent of a child, it is important that you understand the intended treatment and any possible precautions. Equally important is discussion about the evidence of the benefits of tocilizumab and the need for ongoing research into the long term unknown facts.
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 Tocilizumab given?

  • For systemic onset JIA, tocilizumab is given in hospital as an intra-venous infusion once every 2 weeks. For polyarticular JIA the intra-venous infusion is once every 4 weeks 
  • The management of this treatment is always discussed in detail at the start 
  • Regular blood monitoring is required; the frequency will depend on the prescribing specialist’s advice 

Possible side effects

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

  • The most common side effect is an infusion reaction and therefore preventative treatment is given beforehand with the steroid hydrocortisone. An infusion reaction might include any of the following symptoms: flushing, headache, nausea or dizziness. Rarely other reactions might be rash, fever, fatigue or a rise or drop in blood pressure. During an infusion patients are closely monitored and any possible side effect will be seen very quickly and the necessary action taken 
  • Tocilizumab can also cause severe infections, such as pneumonia. Due to the risk of infection, tattoos and body piercings are not recommended 
  • Nausea; diarrhoea; headache 

Regular blood tests to check any unwanted effects of the treatment are very important 

More information on side effects can be found in the patient information on tocilizumab 

Remember to report any concerns about possible side effects to the doctors or nurses 

Tocilizumab with other medicines 

There are no specific drug interactions, however, tocilizumab cannot be prescribed at the same time as another biologic drug, as only one biologic drug is ever prescribed at any one time. 

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 tocilizumab and any other medication taken.

Tocilizumab 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 tocilizumab. If tocilizumab 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.

Tocilizumab and pregnancy

There is not sufficient research information to give advice that either pregnancy or breastfeeding are safe.

Men or women taking tocilizumab should use reliable contraception during treatment and for 3 months 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.

Tocilizumab and alcohol

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

How to travel

  • Before travelling it is important to keep up to date with vaccinations 
  • Live vaccines (see above ‘Tocilizumab with other medicines’) must be avoided. It is important to check whether any required vaccines are ‘live’ before booking a holiday 
  • Your prescribing doctor will have taken details of any vaccinations received or required before starting any biologic drug treatment 
  • 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?
Tocilizumab (TCZ) Infusion Reduces over activity of the immune system by targeting IL6 cells Yes- every 3 months initially 

References available on request    

By retired rheumatology clinical nurse specialist Nicky Kennedy BSc RN QN HV
Original article: 05/02/2016
Reviewed: N/A
Next review due: 05/02/2019