Keeping well and healthy when you have a PID

This information suggests practical ways to stay healthy if you have a primary immunodeficiency (PID).

Staying infection-free helps to keep you out of hospital and to go about your daily life, doing what you want to do. However, it is also important because what happens to you now can make a difference to your health throughout your life.

Recognising the signs of an infection

Some infections, such as colds and other viruses, are inevitable. However, it's still important to try and reduce the number of infections you have. Each time you have an infection, it’s harder to fight off the next one – today’s infections can cause damage that may affect you tomorrow. For example, lots of chest infections can lead to lung scarring which can, in turn, lead to future breathing problems.

General signs of having an infection

These include having:

  • fevers, night sweats and chills
  • an unexplained feeling of tiredness, and aches and pains 
  • loss of appetite
  • weight loss.

Specific signs of infection in parts of the body prone to infections in PIDs

These are listed below alongside symptoms that may indicate you have an infection.

Body part affected                    Symptoms of infection

Airways (bronchi)                        Difficulty in breathing, coughing up phlegm
Lungs                                          Persistent cough, chest pain, shortness of breath
Eyes                                            - Itching, redness, discharge or pain
Ears                                            - Earache or discharge
Sinuses                                       - Facial pain
Skin                                             - Sores with pus or rashes
Intestines                                    - Tummy ache, diarrhoea
Urinary tract                                - Pain or difficulty in passing urine

Remember it’s important that you contact your doctor when you think you have an infection.

This helps ensure you get treatment quickly, to prevent any infection taking hold.

Take the full course of any medication you are given by your doctor

It’s important you complete any course of antibiotics (used to treat bacterial infections), antifungals (used to treat fungi), or antiviral medicines (used to treat a viral infection) that your doctor or nurse may prescribe to treat your infection, even if you are feeling better. This is to help ensure that the infection causing your health problems has been fully got rid of.

Preventing infections

Good hygiene is really important. Here are our top tips for practising good hygiene:

  • Wash your hands regularly and thoroughly, especially before meals and after using the toilet, outdoor activities and playing with pets. If you can’t wash your hands properly for some reason, then use antibacterial alcohol hand gels that are readily available from chemists and other shops.
  • Wash all cuts and scrapes thoroughly with soap and water, and follow with antiseptic.
  • Keep recommended immunisations up to date. Visit our information on immunisations.
  • Good personal hygiene is very important, including careful brushing of the teeth and regular visits to the dentist.
  • Good food hygiene is needed to help avoid food poisoning. You can find out more about food safety advice here.
  • Don’t smoke or let anyone smoke around you or your child. Smoking can cause further chest problems.
  • Keep your house clean and avoid high humidity levels to prevent lung problems.
  • Wash all children’s toys regularly.
  • In general, avoid smoky and crowded places. Where possible, people with PIDs should try to avoid contact with people with infections. Parents of children with severe PIDs should ask the school to inform them of any infection outbreaks and then ask for advice from their immunology team.

Skin care
Some people with PIDs may need to pay extra attention to skin care. Please consult your immunology team about this.

Diet and food hygiene

Eating a good diet, full of fruit and vegetables, is beneficial for everyone’s health, and most people with PIDs don’t need to take extra supplements such as vitamins. You should consult your immunology team before any supplements are taken.

Generally if you have a PID you should avoid raw or undercooked dishes; for example, meats, eggs and cheeses. 

People with PIDs should avoid drinking water of unknown origin, or water that has remained too long in the same container. If travelling outside the UK, take a look at our practical tips for going on holiday.

Keep as fit as you can doing the things you enjoy

People with PIDs can enjoy sports and exercise just like everyone else. Certain PID conditions can interfere with blood clotting and patients with these conditions need to discuss what sports are suitable with their immunology team.

Avoid swimming in polluted sea, lakes or rivers. This can be a cause of dysentery and respiratory infections, as well as ear, nose and throat infections. Enquire how clean the sea and lakes are before you take the plunge. Swimming pool water may also pose a health risk, so ask how often it is monitored for bugs and cleaned.

Hobbies

Gardening can increase your exposure to moulds and fungi, especially if you are dealing with plant pots, leaf mulch or other dead plant material. If you really enjoy gardening, talk to your immunology team.

Pets and PIDs

Some people with PIDs may need to take extra precautions when in contact with pets and other animals. Ask your immunology team about this.

Sleep and rest

Getting enough quality sleep can make the world of difference to your health. The right amount of sleep will depend on your age. Ask your doctor about how much you should need.

Listen to your body when you are feeling tired and ‘under the weather’ and take it easy for a few days.

Going on holiday and travel

Having a PID doesn’t mean you can’t travel and go on holiday, but you need to plan ahead. Visit our web page on going on holiday for more information.

Having surgery or a dental procedure

Having a PID doesn't mean you can’t have an operation or undergo dental procedures such as a root filling or extraction, but it’s important that your surgeon or dentist knows you have a PID so that steps are taken to prevent infections related to the surgery. If you encounter any reluctance from your surgeon or dentist, please get in touch with your immunology team.

Sexual health

People with PIDs should take precautions to avoid sexually transmitted diseases; for example, through the use of condoms. 

This material has been extended and adapted from the IPOPI booklet Stay Healthy! A Guide for Patients and Their Families.

This page was reviewed by the Medical Advisory Panel, February 2018.