Living Actively With PI: Tips for Daily Infection Prevention

A primary immunodeficiency (PI) diagnosis can bring up a mix of emotions. You may feel relief at having a name for what you’ve been going through. But it can also bring fear and anxiety over protecting yourself from infections. You may wonder if you should stay home, skip trips, and cancel social plans. If you feel an urge to pull back from living your life, you are not alone.

When it comes to infection prevention with primary immunodeficiency (PI), the goal is not to live in fear or isolate yourself from your support system. A combination of treatment and daily habits can help lower your infection risk.¹

Immunoglobulin replacement therapy

For many people with PI, treatment includes immunoglobulin replacement therapy. It replaces the antibodies your body does not make. It can be given into a vein, often about once a month. It can also be given under the skin, weekly or monthly. Treatment under the skin can often be done at home.²

Treatment aims to keep your antibody levels from dropping too low between doses. That is why staying on schedule matters, at home and away.¹

Everyday habits that help with infection prevention

People living with PI often must consider the impact of their condition on work, school, travel plans, and friendships. Experts suggest simple daily habits for people with weakened immune systems. These often include:^1,3,4

• Wash your hands – Wash with soap and water. If you cannot, use hand sanitizer with at least 60 percent alcohol.
• Wipe high-touch surfaces – Clean surfaces many people touch, like handrails. On a plane, train, or bus, wipe your armrests and tray table.
• Wear a high-filtration mask – N95 or KN95 masks are best for avoiding respiratory viruses. Wear one in airports, on planes, on buses and trains, and in crowds.
• Choose fresh air – Avoid indoor spaces with poor airflow when you can.
• Keep your distance from sick people – It is okay to reschedule when someone is unwell.

Eating out and at home with confidence

These choices can lower your risk of getting sick from food:^2,4,5

• Order food cooked all the way through – Skip dishes that are undercooked.
• Pass on raw seafood – Experts advise people with weakened immune systems to avoid it.
• Choose safe water – When you travel, drink water you know is safe.
• Wash your hands before you eat – Carry sanitizer in case soap and water are not handy.
• Handle leftovers with care – Germs grow fastest between 40°F and 140°F. Refrigerate leftovers quickly.

Packing and planning for travel

Travel can often take more planning when you live with PI. There are a few strategies for packing and planning travel that may help reduce stress. These can include:^4,6,7

• Pack medicines and infusion supplies in your carry-on – Never put them in checked bags, where they could get lost. Keep them in their original labeled containers. Bring extra in case of delays.
• Carry a letter from your doctor – Ask for one on office letterhead. It should list your condition, medicines, allergies, equipment, and contact details, including an emergency contact.
• Know the airport security basics – You can bring larger amounts of medically necessary liquids. Tell the TSA officer about them at the checkpoint. Ice packs and gel packs that keep medicine cool are allowed. You can also show a TSA notification card or other medical papers.
• Plan for temperature control – Ask your pharmacy how to store your treatment while you travel. Pack cold packs if needed.
• Check out needed vaccines – Some vaccines that travelers are encouraged to get before traveling may contain live germs that may not be safe with PI. Immunoglobulin given into a vein can also affect how well some vaccines work.
• Look into travel insurance – Most US health plans do not cover care outside the country. Consider a plan with emergency medical evacuation.

Staying on schedule while you are away

Talk to your care team before you book your travel, especially for long trips or trips across time zones. It is important to stick to your treatment schedule to avoid delays and potential complications. Your team can help you decide when to take medications and how to build your travel around your treatment. Before you leave, it’s a good idea to find doctors and pharmacies at your destination, just in case. Do not count on having medicines shipped to you on the road.^4,6

Protective measures at work and school

At work, you may have legal protections as a person with PI. The Americans with Disabilities Act (ADA) covers employers with 15 or more employees. Employers must make reasonable accommodations for qualified workers with disabilities. The exception is a change that would cause undue hardship.⁸

A reasonable accommodation is any change in how or where a job is done. Examples include:⁹

• Schedule changes – Shifting your start or end time, or adding breaks
• Leave for treatment – Using paid leave or extra unpaid leave for infusions or visits
• Workspace changes – Changes or equipment that remove a barrier at work

You do not need special words or forms to ask. You can ask out loud or in writing. The change requested must be related to your medical condition. Your employer may ask for some medical records to verify that the change is needed. In general, your employer may not tell coworkers about your accommodation.⁹

Public schools must provide a free, appropriate education to eligible children with disabilities. Some students get an Individualized Education Program (IEP). Section 504 also protects students in schools that get federal funding. Ask your child's school which option may fit best.⁸

Living fully with PI

Infection prevention is about the small things you do every day. Consistent treatment is a starting point, followed by daily habits that can add protection. Talk to your care team about your plans, from trips to a new job.