Overcoming Infusion Anxiety for People With Primary Immunodeficiency (PI)

Living with primary immunodeficiency (PI) means your body has trouble fighting off infections. This is because your immune system, which is supposed to protect you, does not work as it should.1,2

Fortunately, there is a common and very helpful treatment called immunoglobulin (Ig) replacement therapy. This therapy gives your body the antibodies it needs to stay healthy and fight off germs.1,2

What is Ig replacement therapy?

Think of antibodies as tiny soldiers in your body. When you have PI, you do not have enough of these soldiers. Ig replacement therapy gives you a supply of these important soldiers. This therapy uses immunoglobulins – proteins found in the blood to help the body fight off infections – that are donated from healthy donors. These donated antibodies are carefully processed and then given to you.1,2

There are 2 main ways to receive Ig replacement therapy:2

  • Intravenous immunoglobulin (IVIG) – This means the antibodies are given directly into a vein, usually in your arm. This is often done in a hospital or clinic setting. IVIG infusions are typically given every 3 to 4 weeks.
  • Subcutaneous immunoglobulin (SCIG) – This means the antibodies are given just under your skin, usually in your belly, thigh, or arm. SCIG can often be done at home. These infusions are usually given more frequently, often once a week or even daily.

Common fears about infusion therapy

It is completely normal to feel nervous or anxious about receiving Ig infusions, especially when you are first starting out. Many people have similar worries. Some common fears include:3

  • Fear of needles – This is a very common fear. The idea of a needle going into your skin can be unsettling.
  • Fear of pain – You might worry that the infusion will hurt.
  • Fear of side effects – You may be concerned about how your body will react to the medicine.
  • Fear of making a mistake – If you are doing self-infusions, you might worry about doing something wrong.
  • Feeling trapped or restricted – Infusions take time, and you might feel like they are taking away from your normal activities.

Remember that these feelings are valid. You are not alone in experiencing them.

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Practical tips for overcoming infusion anxiety

Here are some helpful strategies to make your infusions more comfortable and less stressful:4

For all infusions (IVIG and SCIG):

  • Educate yourself – Learn as much as you can about your specific therapy. Understanding how it works and what to expect can help reduce fear of the unknown. Ask your doctor or nurse questions.
  • Communicate with your healthcare team – Talk openly with your doctor and nurses about your fears and concerns. They can provide reassurance, answer questions, and offer strategies to help you cope.
  • Breathing exercises – Deep breathing can help calm your nervous system. Try slowly inhaling through your nose for a count of 4, holding your breath for a count of 4, and then slowly exhaling through your mouth for a count of 6. Repeat several times.
  • Distraction – Find something to focus on during the infusion that takes your mind off of it. This could be reading a book, listening to music or a podcast, watching a movie, or talking to a friend or family member.
  • Get comfortable – Bring a cozy blanket, your favorite pillow, or wear comfortable clothes. Make the environment as relaxing as possible.
  • Visualization – Imagine yourself feeling calm and relaxed throughout the infusion. Picture the antibodies working inside your body to keep you healthy.

Specific tips for self-infusions (SCIG)

Self-infusions mean you can give yourself the medicine at home. This offers many benefits, but it can also bring new anxieties. Here are some ways to reduce anxiety:4

  • Get thorough training – Before you start self-infusing, your healthcare team will provide extensive training. Pay close attention, ask many questions, and practice with a nurse until you feel confident.
  • Create a routine – Having a consistent routine for your infusions can make them feel less daunting. Choose a specific time of day and a comfortable, quiet place in your home.
  • Prepare your supplies in advance – Lay out everything you need before you start. This includes your medicine, gloves, needles, syringes, alcohol wipes, bandages, and a sharps container. Being organized can reduce stress.
  • Use numbing cream – If needle pain is a major concern, ask your doctor about a topical numbing cream. Apply it to the infusion site an hour or so before your infusion to help reduce sensation.
  • Practice site rotation – Do not infuse into the exact same spot every time. Rotate your infusion sites (e.g., different areas of your abdomen, thighs) to prevent skin irritation and discomfort.
  • Positive self-talk – Remind yourself that you are capable and doing something good for your health.
  • Lean on your support system – If you have a family member or friend who can be there with you, their presence can be very comforting. They can help with preparation, offer encouragement, or simply provide distraction.
  • The benefits of self-infusions

    While the idea of self-infusing might seem scary at first, there are many benefits once you overcome the initial anxiety:2,5

    • Greater independence and flexibility – You are no longer tied to clinic schedules. You can infuse when it is most convenient for you, allowing for more freedom in your daily life, work, and travel.
    • Reduced exposure to germs – Infusing at home means less exposure to other people and their germs, which is especially important for someone with a weakened immune system.
    • Improved quality of life – Less time spent traveling to clinics means more time for activities you enjoy.
    • Consistent antibody levels – Because SCIG is given more frequently, it helps maintain steadier antibody levels in your body, which can lead to fewer infections and better overall health.
    • Personalized care – With SCIG, your doctor can often tailor the dose and frequency more precisely to meet your individual needs.

    Be patient

    Overcoming infusion anxiety is a journey, not a single step. Be patient with yourself. Each infusion can become a little easier. With proper education, preparation, and support, you can gain confidence and embrace the independence and health benefits that Ig replacement therapy provides.5

Treatment results and side effects can vary from person to person. This treatment information is not meant to replace professional medical advice. Talk to your doctor about what to expect before starting and while taking any treatment.

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