Most people are familiar with getting sick from time to time, a lingering cold, recurring sinus infections, or fatigue that takes longer than expected to go away. It’s often easy to attribute these moments to stress, a busy schedule, or seasonal illness, expecting things to improve with rest.
For some individuals, however, these patterns may be early signs of an underlying immune system condition known as Primary Immunodeficiencies (PI). Because symptoms often appear gradually and resemble common illnesses, PI can be difficult to recognize early on. Receiving a diagnosis can bring clarity, along with important questions about what it means and what comes next.
At AOM Infusion, we care for patients with primary immunodeficiencies every day. Our team of exceptional nurses, clinical pharmacists, and patient advocates is here to walk alongside you — from your initial diagnoses, to your very first infusion, and every treatment after. This guide is designed to help you and your support system understand what PI is, how immunoglobulin (Ig) therapy works, and what to expect when AOM becomes part of your care team.
What Is Primary Immunodeficiency?
PI is a group of more than 550 disorders in which the immune system doesn’t work the way it should, as defined by the CDC and the Immune Deficiency Foundation (IDF). This is usually because the body isn’t producing enough antibodies, or the antibodies it produces are not functioning properly. Without enough healthy antibodies, the immune system has a harder time protecting you from infections.
PI is often present from birth due to a genetic change in the immune system, though 70 to 90% remain undiagnosed. In fact, it’s estimated that 1 in 1,200 people in the United States are living with some form of primary immunodeficiency.
There’s a saying in medicine, “when you hear hoofbeats, think horses, not zebras.” It’s a reminder for clinicians to start with the most common explanations first, since those account for the majority of cases they see.
But it’s not a rule without exceptions. Some patients don’t fit the typical pattern. Their symptoms, history, or response to treatment can point to something less common. In those moments, it becomes important to look beyond the obvious and consider rarer conditions, like primary immunodeficiency (PI).
That’s the idea behind the “Think Zebra” message from the Immune Deficiency Foundation. It encourages clinicians to stay curious, recognize when something doesn’t add up, and be open to diagnoses that might otherwise be overlooked.
Symptoms like frequent infections or slow recovery are sometimes dismissed as bad luck, when the real answer may be PI. If that sounds familiar, it may be worth starting a conversation with your care provider. Asking questions and sharing your full health history can help uncover what’s really going on and move you closer to the right diagnosis.
Common Signs to Watch For
Everyone’s experience with PI is different, but there are patterns that may be worth a closer look. You may want to speak with your provider if you’ve experienced:
- Frequent, recurring, or unusually severe infections — particularly in the sinuses, ears, or lungs
- Infections that take a long time to resolve or that don’t respond well to antibiotics
- Getting sick from infections that rarely affect healthy individuals
- Autoimmune complications, like inflammatory conditions or blood disorders
- Feeling run down or like you’re always catching something
Common PI Disorders AOM Treats
There are hundreds of forms of PI, ranging from mild to more complex. Some of the most common types our care team treats include:
- Common Variable Immune Deficiency (CVID) — the most common symptomatic PI in adults, where the body produces very low levels of antibodies
- X-Linked Agammaglobulinemia (XLA) — a condition primarily affecting males in which the body produces very few or no B cells, making it unable to make antibodies
- Selective IgA Deficiency — a deficiency in IgA antibodies, which protect the body’s mucous membranes; the most common form of PI overall
- Severe Combined Immunodeficiency (SCID) — a serious condition affecting both B and T cells that requires early and focused treatment
Because no two patients are the same, care is never a one-size-fits-all. Treatment plans are tailored to your specific needs, your lifestyle, and how your condition presents.
“You’d be surprised how seamless living with a chronic illness becomes when you find a really good nurse, ” explains AOM Nurse Lisa Stofko, RN, BSN, CRNI, IgCN. With the right care team in place, managing PI can feel more integrated into your life, helping you live your life to the fullest.
Treatment Options: IVIG, SCIG, and Steroid Therapy
For patients with PI, FDA-approved immunoglobulin (Ig) replacement therapy is a first-line approach to treatment. This includes both intravenous (IVIG) and subcutaneous (SCIG) options, each designed to deliver the antibodies your body isn’t producing in sufficient amounts. AOM Infusion specializes in delivering Ig therapy and offers multiple options to fit your diagnosis, lifestyle, and what feels most comfortable for you.
IVIG and SCIG
Both IVIG and SCIG are forms of Ig therapy, administered in different ways.
- IVIG is administered through an IV, delivering a concentrated dose directly into the bloodstream, typically every three to four weeks.
- SCIG is delivered just under the skin in smaller, more frequent doses, allowing the medication to absorb gradually. Many patients choose to self-administer SCIG at home after being trained by their nurse.
For patients with PI, IVIG and SCIG help:
- Replace the missing antibodies that your immune system can’t produce on its own
- Protect against bacterial infections, particularly in the sinuses and respiratory system
- Support your immune system in managing autoimmune complications that some PI patients experience
Choosing between IVIG and SCIG is both a clinical and personal decision. Your AOM care team works closely with you and your provider to determine the right fit based on your needs, preferences, and lifestyle. And as those needs evolve, your treatment approach can evolve with you.
Steroid Therapy
For some patients with PI, a short course of corticosteroids may be prescribed alongside Ig therapy. It’s important to know that steroids work differently from immunoglobulin replacement; they don’t replace missing antibodies. Instead, they help calm overactive immune responses that can sometimes occur alongside PI. Steroid use is typically short-term and targeted to specific situations; your physician will guide you through.
What does treatment look like?
When you receive care from AOM, you gain a dedicated team of expert clinicians who will create a customized treatment plan specific to your needs. Your care team is your advocate. We’ll stand by your side every step of the way to ensure the best possible outcomes, helping you navigate the treatment process as well as any insurance questions.
Our highly trained clinical pharmacists and nurses will collaborate with your physician or health care provider to ensure your infusion therapy care is woven seamlessly into your overall treatment plan. Together, we review each patient’s diagnosis, treatment history, prior reactions, and compare to our range of the latest and best Ig products, selecting the best treatment for you. Your infusions will be administered on your schedule in the comfort of your home or in one of our private state-of-the-art infusion suites.
Side Effects: What to Expect and How We Help
For more than 30 years, we’ve delivered exceptional care, administering the highest quality of Ig therapy for more than 80 chronic conditions, including PI. We know that starting a new therapy naturally comes with questions about how your body might respond. That’s why our nurses and pharmacists are highly trained in managing Ig therapy and monitoring for side effects, so you can feel supported and confident in your care every step of the way.
Common, Mild Side Effects
Some patients may experience mild side effects, particularly in their first few infusions, as your body adjusts. These are normal and often ease over time.
- With IVIG, you may experience headache, fatigue, mild flushing, chills, or a low-grade fever.
- With SCIG, you may experience mild swelling, redness, or temporary discomfort at the injection site.
- With steroid therapy, you might experience insomnia, elevated blood sugar, or agitation
Rare but Serious Reactions
In rare cases, more significant reactions can occur, including severe allergic reactions. This is exactly why your AOM nurse is present with you throughout every infusion.
“We provide an anaphylaxis kit in the home for every patient, and a trained RN is present throughout the entire infusion,” says Maya Murilo, Clinical Pharmacist at AOM Infusion.
Within 24 to 48 hours after your treatment, your Clinical Care Navigator will call to check in, see how you’re feeling, and answer any questions you might have. And if something comes up between visits? AOM’s clinical team is available 24 hours a day, 7 days a week. A real person is always just a call away.
How AOM Keeps Every Infusion Safe and Comfortable
From your very first infusion, AOM’s clinical protocols are designed with your safety and comfort in mind. This includes:
- A thorough health assessment before treatment begins
- Careful, gradual infusion rates — especially for your first few sessions
- Continuous vital sign monitoring throughout your infusion
- Regular IgG lab checks to keep your therapy on track
- Guidance on what to watch for and when to reach out
Your Care Team Is Working Together for You
Managing PI well is truly a team effort. When you’re in AOM’s care, our nurses and pharmacists stay in close communication with your physician — sharing lab results, treatment updates, and any changes in how you’re doing. You’ll never feel like you’re caught in the middle of a handoff. We work as one team, with you at the center.
Living Well With PI
Receiving regular therapy becomes routine with managing PI, but there are everyday habits that can also make a meaningful difference in how you feel.
Simple Steps to Protect Your Health
- Practice good hand hygiene, especially during cold and flu season.
- Avoid close contact with people who are visibly ill when possible.
- Keep up with recommended vaccinations. Discuss this with your physician.
- Incorporate exercise and physical activity into your daily routine
- Stay hydrated and try to limit caffeine before your infusion, as it can affect how you feel during treatment.
- Practice self-care before, during, and after your treatment.
We’re Here For You
At AOM Infusion, we’re here for you at every step, committed to improving health and enhancing life. Whether you’re just getting started or looking for answers about your current treatment, AOM is in your corner. Our goal is to make care feel clear and easy to navigate.
Have questions? Contact your AOM Care Team anytime — we’re available 24/7.
Explore more resources in our Resource Library for mindfulness guides, therapy education, and tips to support your care journey.
For Providers: Referring a patient to AOM is simple. Fill out an online referral form or call 800-746-9089 to get started.
