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Why does my child need this medicine?

Infliximab is a medicine used to help keep symptoms of your child’s inflammatory bowel disease under control. Your child will have tried other medicines which have not worked and the doctor feels that this medicine may help.

What is infliximab?

Infliximab is a medicine that targets a particular protein in the body called TNF-alpha (tumour necrosis factor alpha). TNF is produced naturally by your body as part of the immune response.

When the body produces too much of this protein, it is thought that this might be responsible for inflammation in the intestine of those who have IBD. Infliximab sticks the TNF-alpha, stopping inflammation and reducing symptoms.

Are there are checks that need to be done before starting infliximab?

Your child will need some pre-treatment screening to make sure that it is safe for them to have the medicine. We will need to do some blood tests to make sure that they have no underlying infection and a chest x-ray.

Your child will have to be infection free at the time of the infusion and if they are unwell, contact the gastro nurses as the appointment will have to be rearranged.

How long will it be until the infliximab starts to make me feel better?

You may begin to feel better within a couple of weeks but can take up to 6 weeks after your first infusion. You will have a blood test before each infliximab infusion to monitor the effectiveness of the medication on your body.

How is Infliximab given?

Infliximab is given initially in 3 doses, also known as an induction block.

After your child has received their first infusion, they will then receive appointments to have additional infusions at 2 weeks and at 6 weeks. It is common for your child to receive infliximab infusion every 8 weeks after the induction block.

All infliximab infusions are given on Medical Daycare (MDC) at Sheffield Children’s (D floor, Stephenson Wing). Your child will be admitted to MDC and the treatment will usually take between 4 to 8 hours to complete.

Your child does not have to get changed into a hospital gown as infliximab is given through a fine plastic tube called a cannula which is inserted into a vein. Infliximab can only be given to your child in this way.

The infusion will take around 2 hours to run through, and a nurse will look after your child monitoring their pulse, blood pressure, breathing rate and heart rate before during and after the infusion.

Once the nurse has completed the post infusion observations, the cannula will be removed and you will be able to go home. Your child’s next appointment will be sent to you in the post.

What are the side effects of infliximab?

As with many medicines, unwanted side effects can occur. If you have any concerns in hospital, speak to nurse looking after you for further advice. If you are worried when you get home after an infusion, contact the gastro nurses who can advise appropriately.

Side effects that have been reported by patients include:

  • swelling of the hands and feet, lips
  • tenderness or pain in the chest, muscles and joints
  • difficulty swallowing or breathing
  • fever
  • rash
  • itching
  • jaw pain
  • headaches
  • hives (swollen red patches on the skin)
  • joint pain
  • nausea
  • diarrhoea

Infliximab is believed to be a safe and effective way to control the symptoms but research has shown that there may be a small increased risk of developing certain types of cancer with infliximab. If you have any questions about this please ask your doctor who will be happy to discuss this with you before starting infliximab.

While on infliximab, is there anything I need to do to stay healthy?

Infliximab can make some people drowsy so it is a good idea to make that you have transport arranged for when the infusion has finished.

Try to avoid people who have infections as infliximab affects the immune system so your child will become more prone to developing infections such as coughs, colds and so on.

Your child must not receive any live vaccines whilst having infliximab: these include polio, yellow fever, BCG, MMR and rubella. If your child comes into contact with chicken pox or measles and you are not sure about their immunity status, contact the gastroenterology nurses for further advice. It is safe for them to have the inactive form of polio and it is recommended that your child have the inactivated annual flu vaccine.

Your child may be more at risk of sun damage to your skin while you are on infliximab therefore it is important that a high level sun screen is used.

Contact us

If you need any help or advice with the information in this resource, you can contact the gastroenterology nurses by telephoning 0114 271 7111 or 0114 271 7162 or by emailing: scn-tr.gastronurses@nhs.net

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Please note: this is a generic information sheet relating to care at Sheffield Children’s NHS FT. These details may not reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If this information has been translated into another language from English, efforts have been made to maintain accuracy, but there may still be some translation errors. If you are unsure about any of the guidance in this resource or have specific questions about how it relates to your child, always ask your healthcare professional for further advice.

Resource number: GAS12

Resource Type: Article

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