What is PI?

So you may have symptoms that point to PI. There’s a lot you probably want to know. You’re in the right place.

Primary immunodeficiency (PI) is an umbrella term used to describe a group of more than 450 disorders that have one thing in common: they keep the body’s immune system from working like it should. (Autoimmune disease, which is more well known than PI, also involves the immune system. But it’s not the same as PI.)

  • Common variable immune deficiency (CVID)
  • IgG subclass deficiency (IgGSD)
  • Specific antibody deficiency (SAD)
  • Severe combined immunodeficiency (SCID)
  • X-linked agammaglobulinemia (XLA)

1Usually inherited

That means it runs in families. There’s a genetic aspect. In families with a known history of PI, diagnosis can be easier.

2Characterized by infections

PI can mean more infections, repeated infections, and infections that are difficult to treat.

3A rare disease

That’s why it can take 15 years, on average, from first symptoms to diagnosis based on an Immune Defiency Foundation (IDF) survey of 1,437 participants.


DOWNLOAD PI FACT SHEET

Signs & symptoms

Symptoms and signs of PI usually involve infections that frequently come back or are unusually hard to treat. The immune systems of adults and children are different. So the warning signs can vary.

Check the lists of warning signs for children and for adults. If the person you’re concerned about is showing two or more of the warning signs for their age group, talk to a doctor about the possibility of PI as the cause.

  • Within one year
  • Four+ ear infections
  • Two+ serious sinus infections
  • Two+ months on antibiotics with little effect
  • Two+ pneumonias

  • Long term
  • Infant fails to gain weight/grow normally
  • Recurrent, deep abscesses
  • Persistent thrush/fungal infection in mouth or on skin
  • Need for intravenous antibiotics to clear infections
  • Two or more deep-seated infections (like septicemia)
  • A family history of PI
  • Within one year
  • Two+ ear infections
  • Two+ sinus infections (in the absence of allergy)

  • Long term
  • One bout of pneumonia per year for two+ years
  • Chronic diarrhea with weight loss
  • Recurrent viral infections (colds, herpes, warts, condyloma)
  • Repeated need for intravenous antibiotics to clear infections
  • Recurrent, deep abscesses of the skin or internal organs
  • Persistent thrush/fungal infection on skin or elsewhere
  • Infection with tuberculosis-like bacteria
  • A family history of PI

Doctor visits

Concerned about the possibility of PI? Your doctor is your go-to for the answers you need. Make an appointment, and bring a list of specific symptoms that you’ve tracked. Noting the frequency of these symptoms is something your doctor will appreciate.

Get the tips resource

Resources

Takeda’s MyIgSource community offers peer-to-peer support, along with educational programs and resources that include information and helpful tips.

The MyIgSource community offers educational resources that include information and helpful tips. Some of those resources are available for download right here.

DOWNLOAD resources

You can connect with MyIgSource and request many others.

Understanding primary immunodeficiency is a free virtual educational program. It shares facts that can be helpful to anyone at any point in the PI journey.

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Peer support

Dayna, Julie, and Austen are just a few of our Patient Advocates.

A team of advocates

People living with a chronic illness know the value of peer-to-peer support. Everyone at MyIgSource lives with PI themselves or is a care partner for someone who does. That includes our Patient Advocates, who are here to help connect you with education and resources. MyIgSource is a community where we’re here for each other.

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Welcome!

We’re glad to help you learn more about PI. Watch your mailbox for updates from Takeda’s MyIgSource, coming soon.

So what exactly is primary
immunodeficiency (PI)?

Kind of overwhelming.

A whole new language.

Treatable.

Worth learning about.

All of the above.