Medicines that affect the immune system

Note: Replacement steroids for children with adrenal insufficiency do not cause problems with the immune system and this resource is not intended for these children unless they are taking other medicines that affect the immune system.

Your name:

Date of birth:

Address:

Name of your team:

Contact numbers for your team:

Which medicines am I taking that may affect my immune system? 

Why do I need to know about infections while I am taking these medicines?

Sometimes people who are taking these medicines can pick up infections more easily or the infections that they get can be more serious than for someone who is not taking these type of medicines.

Are there any special infections I need to know about?

If you come into contact with anyone who has chickenpox, measles, flu, or Covid, please contact your team for advice.

Some children may need to be given treatments, sometimes in hospital. Always let your team know if you are unwell with any infection. If you cannot contact them, then either see your GP, or go to your local emergency department, and let them know which medicines you have been taking.

What about if I need to have surgery?

If you have surgery planned, including dental surgery, always talk to your team about it in advance. They will be able to let you know if you need to stop any of your medicines for a period of time before or after your surgery. If you are on steroid medicines you may need extra steroids at the time of your surgery.

If you need emergency surgery, always tell the team looking after you about the medicines (including steroids) you are taking. You should also let the team who usually prescribe your medicines know as soon as you can. Your usual team can then let you know what to do about your medicines following surgery.

Can I get a piercing or tattoo?

We advise that you do not get any piercings or tattoos while you are taking medicines that put you at higher risk of infection. This is because tattoos and piercings make holes in the skin where infection can get in. If you are really keen to get your ears pierced, talk with your team who may be able to suggest how to keep the risk of infection as low as possible.

There are also temporary tattoos and magnetic earrings that do not damage the skin at all.

What about vaccines?

Most vaccines are safe to have and help to protect you from serious infection.

We recommend that you take up the offer of the vaccines that are offered to every child in the UK but check with your team first as some vaccines may be ‘live’. Live vaccines contain tiny amounts of slightly altered versions of the infection. This means sometimes they can cause the infection they are meant to prevent if your immune system is not working normally. If your team want you to avoid live vaccines they will let you know when you contact them.

Before you start your immune medicines, you may be advised to have any vaccines that you have missed or have planned vaccinations a little bit early so that they are given before you start your immune medicines. Sometimes your team will decide it is better to start the immune medicines straight away without waiting for you to catch up with missed vaccinations.

You may be advised to get vaccinated against chickenpox if your test shows that you have never had it. This vaccine cannot be given once you start the stronger immune medicines and can protect you from having to have medicines in hospital if you catch chickenpox.

You should have a vaccination against flu every year. You can have the flu vaccine by injection as this type of flu vaccine is not live. However, the nasal flu vaccine that is usually offered to children is a live vaccine and is not recommended if you have been told to avoid live vaccines.

If you are offered a vaccine against Covid, we recommend that you have this. Covid is not a live vaccine and is safe for people taking medicines that affect the immune system.

Can my family have vaccines?

If everyone in your family is up to date with their vaccines it helps to protect you from picking up infections from them. It is safe for your family and friends to have live vaccines, including the nasal flu vaccine, and then to spend time with you. You do not have to worry that they will give you an infection.

If you have people in your family who have never had chickenpox, it is a good idea for them to be vaccinated against this if it can be arranged. This will help to protect you from chickenpox as well as protecting them. Please visit the NHS website for more information about the chickenpox vaccine.

What if I am planning to travel somewhere?

Before you go you should:

• discuss with your team where you are going and how long you will be away, especially if you are planning to travel abroad
• make sure you have enough medicines for your trip
• always leave yourself plenty of time before you travel to check if there are travel vaccinations or other treatments needed for any country that you are travelling to (or through)
• if you need vaccines check with your team as some are unsuitable if you have been told to avoid live vaccines

You should take care to reduce your risk of infection when you are travelling in the same way that you do when you are at home.

If you become ill when you are away seek medical advice. Let anyone treating you know the medicines that you are taking and please share this resource with them. If you take a copy of your most recent clinic letter this may be helpful for anyone offering you treatment. You can contact your Sheffield Children’s team for advice using the numbers at the top of this resource.

How can I reduce the risk of infection?

Ways to reduce your risk of infection include:

• try to avoid close contact with people you know have an infection
• wash your hands regularly and carry around a small bottle of antibacterial hand gel
• keep your mouth clean by brushing your teeth regularly
• make sure your food is stored and prepared properly
• try to keep your house clean and hygienic, especially the kitchen, bathrooms and toilets

Helpful information about staying safe and healthy when travelling abroad can be found on the Fit for Travel NHS website.

 Other information

 Each medicine may have additional safety information. Your team will have told you about anything else you need to know when you started your medicine.