If you’re living with primary immunodeficiency (PI), you may know the frustration of colds that linger or infections that keep coming back. These aren’t just bad luck — frequent infections are a common sign of PI.
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“So tired of fighting constant colds and sinus infections,” shared a member of myRAteam, a social network for people with rheumatoid arthritis (RA) and their loved ones. That feeling is common among people with PI disorders — a group of conditions that make it harder for the body to fight off germs.
In this article, we’ll explain why PI can cause recurrent (repeated) infections, such as Staphylococcus aureus (S. aureus, or staph), ear infections, or skin abscesses (painful, swollen areas filled with pus). You’ll learn what warning signs to watch for, which infections are most common, and how doctors treat them. We’ll also share tips for staying healthier and real experiences of others living with immune system conditions.
Your immune system’s main job is to protect you from germs like bacteria, fungi, and viruses. It relies on special cells and proteins — including antibodies, T cells, and B cells — to fight infections. For people with PI, some of those defenses don’t work the way they should.
There are 10 main types of PI, based on which part of the immune system is affected. Some people are born without enough working T cells or B cells (white blood cells that help fight infections and make antibodies). Others may have low antibody levels, weak phagocytes (cells that “eat” germs), or problems with the first-line immune response.
Some people with PI don’t make enough antibodies, especially a type called immunoglobulin (Ig) G. One myRAteam member put it this way: “Thirty years of steroids put a hole in my immune system — I don’t make antibodies: IgG, IgA, IgM. IgG is the only one available synthetically, so I get that to help fight off infections.”
Common types include:
There are more than 500 types of PI, and each affects the immune system in its own way. Depending on the condition, infections may develop in different parts of the body, such as the lungs, skin, or sinuses.
On the social network MyLupusTeam, one member shared their frustration with recurrent infections: “I’m flaring again, and I don’t even know why. I keep getting infections — it’s like every week. I’m praying things start getting better.”
Staphylococcus aureus is a type of bacteria that often lives harmlessly on the skin or in the nose. However, in people with PI disorders, staph can lead to serious or repeated infections. S. aureus infections can affect the skin, bloodstream, lungs, bones, or internal organs. Some strains, such as methicillin-resistant S. aureus (MRSA), are especially hard to treat because they don’t respond to common antibiotics.
People with a weakened immune system are more prone to staph infections. Several risk factors or clinical features can raise the risk of an infection returning. These include:
Some types of PI are more likely to cause staph infections. These include:
Skin problems are often among the first clues that something is wrong with the immune system. About 70 percent of people with PI develop skin issues, including staph infections. These may include:
Certain PI disorders make it hard for the body to control bacteria on the skin. Recurrent skin abscesses, especially when deep and filled with pus, are considered a key warning sign of PI. These infections may heal slowly, come back often, or spread deeper into the body.
Frequent sinus and lung infections are common in people with antibody deficiencies, such as:
Without working antibodies, the body has trouble clearing bacteria from the airways. This can lead to repeated sinusitis (swelling of the tissue lining the sinuses), bronchitis (inflammation of the bronchial tubes, which carry air to and from the lungs), or pneumonia (infection in the air sacs of one or both lungs). Over time, these infections can cause permanent lung damage. Some people need immunoglobulin therapy or long-term antibiotics to stay well.
One MyLupusTeam member shared, “I can’t take my treatments because I can’t seem to get over these sinus infections.”
The immune system also plays a key role in protecting the gut. When it isn’t working properly, even common microbes can cause problems. For people with PI, gastrointestinal (digestive) issues can become frequent, severe, or hard to treat. Depending on the type of PI, between 5 percent and 50 percent of people may experience symptoms, such as:
Common causes of gastrointestinal infections include:
If left untreated, these infections can cause long-term inflammation, damage the intestinal lining, and raise the risk of malnutrition, liver disease, or even cancer.
Certain PI disorders are more closely tied to gastrointestinal infections, including:
In people with PI, urinary tract infections (UTIs) can also happen more often and be harder to treat. Some people may also get repeated bladder or kidney infections, even with treatment. One MyLupusTeam member asked, “Does anyone else here get UTIs or kidney infections often? Have you ever heard of inflammation from a kidney infection moving up into the lungs or chest?”
Common UTI symptoms include:
Though it’s rare, these infections can spread if the immune system can’t keep them in check. This could lead to a kidney infection that causes chest pain or breathing problems. People with PI may also get recurrent yeast infections, especially if they’ve taken antibiotics frequently.
UTIs that return again and again should be taken seriously. Testing, early treatment, and working with an immunologist (immunology specialist) can help prevent complications and keep infections from spreading.
For people with primary immune deficiency, infections are a constant concern. If left untreated, an infection can lead to serious illness or even organ damage. Researchers and doctors recommend a three-part approach: Identify the infection early, treat it promptly, and take steps to prevent it from coming back.
Common treatments include:
In some cases, gene therapy or a bone marrow transplant may also be options. Supportive care may include sinus rinses, dietary changes, and staying current with recommended vaccines. Prophylactic (preventive) antibiotics may also be helpful.
Since PI often overlaps with other health issues, it’s important to have a doctor who can help coordinate your care. Don’t wait for an infection to spread or get worse — talk with your healthcare team to create a personalized plan for managing and preventing recurrent infections.
On myPIteam, people share their experiences with primary immunodeficiency, get advice, and find support from others who understand.
Have you or someone in your family been diagnosed with PI? What kind of repeat infections have you had? Share your story in the comments below.
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