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General care

A primary immunodeficiency (PI) diagnosis is a milestone along the journey for answers, and the beginning of the journey to manage the condition. Some lifestyle changes may be necessary, but most people with PI can lead full lives.

Diet

A healthy diet is essential to maintaining health and preventing infections. A regular diet is usually sufficient, but modifications may be needed during acute illness. Special diets are not typically necessary unless the person has another condition such as diabetes. 

In some cases, enteral nutrition or total parenteral nutrition (TPN) may be needed for those who can't eat or absorb nutrients by mouth. Enteral nutrition involves feeding directly into the stomach or intestine with a special tube, while TPN is nutrition delivered directly into the bloodstream through an IV. 

Speak to your primary healthcare provider for specific guidance on maintaining a healthy diet.

Nutritional supplements

There are many nutritional supplements available including vitamins, herbal supplements, and probiotics. Generally speaking, these aren’t regulated by the U.S. Food and Drug Administration (FDA), and their claims of improving health or boosting the immune system are not based on scientific data. Use extreme caution when taking these products, as they may interact with prescription medicines, and probiotics contain live microorganisms. You should always ask your primary healthcare provider before taking any supplements.

Chapter 38: General Care

Download this chapter from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition.

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Hygiene and travel

Proper hygiene is crucial for people with PI and their families to prevent exposure to germs and infections. This involves regular bathing, and hand washing using soap and hot water for at least 20 seconds. Regular dental visits, proper brushing, and flossing are also important to prevent tooth decay and related complications. 

To avoid infectious diseases, people with PI should minimize their exposure to people or places that carry a risk of infection, such as crowded indoor spaces during flu or COVID surges. For travel-related questions, it's best to consult with your immunologist or primary healthcare provider before your trip.

Learn more about COVID-19 and the flu:

COVID-19 | Influenza

Get guidance on traveling safely
Little girl washing her hands with soap and water.

Daycare

Parents and guardians of young children with PI can often use daycare, but they should be aware that children can be exposed to infections. In large institutional daycare facilities, the exposure can be greater. Caregivers may want to consider smaller daycare settings or in-home daycare. Always speak with your pediatrician or immunologist before enrolling your child.

Get more tips for caring for children
Three preschool-aged kids smiling.

Stress

Stress has been scientifically linked to increased susceptibility to illness, especially for those with PI. Reducing stress improves immune function. There are several easy-to-incorporate stress reducers like massage therapy, biofeedback, meditation, hobbies, physical activity, and adequate sleep. If stress becomes overwhelming, it's important to seek help from your primary care provider who can assist with coping strategies or provide a referral to a specialist.

Exercise 

Exercise is essential for maintaining a healthy lifestyle, regardless of immune status. Physical activities such as swimming, biking, running, and walking can promote enhanced lung function, muscle development, strength, and endurance. Regular exercise also reduces stress and anxiety. People who exercise regularly are also less prone to getting sick. 

Exercise and sports can be great coping mechanisms and socialization opportunities for children with PI, but some activities may be unsuitable for those with specific conditions. Always reach out to your or your child’s primary healthcare provider before starting any new exercise or sports programs.

Mental health considerations

Having PI (or having a child with PI) can be a stressful, scary, and traumatic journey. But you don't have to do it alone. Use this list of mental health tips to get started.

Read mental health tips

Sleep

Good sleep is crucial for good health. Most experts recommend a consistent sleep schedule, as irregular sleep patterns can negatively affect the immune system. To ensure good sleep hygiene, go to bed and wake up at the same time daily. Try to avoid heavy meals, caffeine, and alcohol consumption in the evening. Napping should also be limited when possible. Children under the age of 3 require both naps and nighttime sleep.

Girl asleep with her stuffed animal.

Primary care

Visiting a primary care provider regularly is crucial for good health, especially for people with PI. Some immunodeficiencies can cause other illnesses. For example, common variable immune deficiency (CVID) increases the risk of autoimmune diseases, leukemias, and lymphomas. 

A primary care provider who knows the individual well and sees them regularly may be the first person to recognize a symptom of one of these conditions. Children should have annual check-ups, as poor growth or development may indicate a potential issue. Regular health screenings are important to detect and address any potential issues early on.

Doctor checks adult woman's lymph nodes.

Vaccines and immunization

Vaccines have greatly improved public health by providing protection from harmful microbes. However, the effectiveness of vaccines in individuals with PI is not clear-cut. The immune system has two major defense mechanisms: the innate and adaptive systems. The adaptive system is capable of creating specific immune responses to new threats, while the innate system is not pre-programmed for every threat. 

Vaccines activate the adaptive immune system, and many people with complement deficiencies, phagocytic disorders, and even people with some antibody disorders like selective IgA deficiency can still produce antibodies to vaccines. However, those with severe adaptive system deficiencies including individuals with common variable immune deficiency (CVID), severe combined immune deficiency (SCID), significant T cell deficiencies, or agammaglobulinemia should avoid live virus vaccines, like the measles, mumps, and oral polio vaccines. 

Purified protein and non-viable vaccines are safe for all individuals with PI, but their antibody response may still be weaker compared to immunoglobulin therapy. The role of vaccines during immunoglobulin therapy is not well understood. 

Family members of PI patients are encouraged to get and stay up-to-date with their vaccinations, especially for readily communicable diseases like the flu. Speak to your immunologist for any specific vaccine questions. 

Resources on vaccines

As a person living with primary immunodeficiency, it’s important to have the facts about vaccines. Learn more by viewing one of our resources.

Browse vaccine resources

Learn more about PI and immunizations

In 2014, the IDF Medical Advisory Committee published comprehensive recommendations on vaccines for those with PI and their family members in The Journal of Allergy and Clinical Immunology.

Read journal article

Illness

People with PI will still get sick, even after diagnosis and treatment. It's important to seek medical advice for symptoms like fever or a cough. Never self-treat with leftover antibiotics, and always follow your healthcare provider's advice. Ignoring an illness or undertreating it can lead to negative long-term consequences. The key to managing PI is adopting a healthy lifestyle and complying with your healthcare team's recommendations for treatment.

Woman sick

This page contains general medical and/or legal information that cannot be applied safely to any individual case. Medical and/or legal knowledge and practice can change rapidly. Therefore, this page should not be used as a substitute for professional medical and/or legal advice. Additionally, links to other resources and websites are shared for informational purposes only and should not be considered an endorsement by the Immune Deficiency Foundation.

Adapted from the IDF Patient & Family Handbook for Primary Immunodeficiency Diseases, Sixth Edition.  
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