RareDisease.net

The ConfidentPatient:A Doctor Discussion Guide for the Treatment ofPrimary Immunodeficiency

Among gray clouds, a man holds an umbrella which casts a clear blue sky around him.

When it rains, it pours

Living with primary immunodeficiency (PI) often looks like learning to prepare for the worst. Even a bout of the common cold can feel more prolonged and severe than ever before. You might also notice that it now takes much longer for you to recover from illness, even with treatment. Things that other people seem to quickly bounce back from can feel much more difficult to manage for you.

When day-to-day management of PI starts feeling like an uphill climb in the mud, it may be time to talk to your doctor about your options.

A clipboard with gray clouds.

Is it time for something new?

While standard PI treatment often includes antibiotics and antivirals to manage and prevent infections, these treatments will not work for everyone. Some people with PI have persistent infections that come back even after treatment. Others develop severe and potentially life-threatening complications.

If your PI symptoms are becoming more severe or more frequent – even with medication – sharing your experience with your care team can help you work together to explore your options and come up with a plan that fits your unique treatment needs.

Questions for your care team

Have an upcoming appointment with someone on your care team? It’s a great time to check in with yourself about any changes to your symptom patterns and get your questions in order. Having an honest discussion about your treatment needs can help you determine your next steps.

Not sure where to start? These questions can help guide your conversation.

Tracking symptoms and severity

  • What symptoms should I be tracking, and what’s the best way to record them?
  • If my symptoms suddenly worsen, or I think I’m experiencing a complication of PI, what should I do?
  • How would you describe my PI type and severity? How will that inform your treatment approach?

Exploring treatment options

  • Based on my symptoms and treatment history, what treatment options am I a good candidate for?
  • What infusion treatment options are currently available for PI, and how do they work?
  • How are infusion medications different from other types of PI treatment?

Treatment that fits your needs

  • If my treatment plan includes infusion medications, what will my treatment schedule look like?
  • How will you evaluate whether my treatment is working or not? How will we measure and track this?
  • If we decide it’s time to make a treatment change, what does that process look like?

Coming prepared to your appointment with questions like these can help you get the most out of the time with your doctor and ensure you’re getting the care you need.

Symptom Check-in

If your PI symptoms have recently gotten worse, it may be time to address them. Let’s check in about how you’ve been feeling lately.

In the last month, have you experienced a worsening of any of the following?


☐ Getting infections/sick more often and more severely
☐ Taking longer to recover from sickness
☐ Infections that come back even with treatment
☐ Needing longer courses of antibiotics than usual
☐ An enlarged spleen
☐ Swollen lymph nodes
☐ Unexplained weight loss
☐ Diarrhea or other digestive issues
☐ More severe side effects from live vaccines

The Check-up
Speech bubbles with a question mark and patterns.

What to say at your next appointment

Describing the impacts of PI on your daily life can sometimes be challenging. Here are some ways to talk about them with your doctor:

  • “I’ve been getting sick a lot more often lately, and even things like the common cold can feel really severe. What can we do to address that?”
  • “Managing the complications of PI and my other health conditions is getting harder and harder. Can we talk about that?”
  • “Even with treatment, I’m finding it difficult to get relief from my day-to-day PI symptoms. Is it time to think about finding a new treatment option?”
Download PDF