Primary immunodeficiency

What is PI?

Primary immunodeficiency (PI) is also known as PID or PIDD (for primary immunodeficiency disorders, or diseases). It describes a group of more than 450 disorders that can affect a person’s immune system.

The immune system protects the body from bacteria and viruses. If it’s not working the way it should, a person will be more likely to get infections that are frequent or hard to treat.

The most common type of PI is selective immunoglobulin A (IgA) deficiency. Other types of PI include:

  • Common variable immune deficiency (CVID)
  • X-linked agammaglobulinemia (XLA)
  • Severe combined immunodeficiency (SCID)

PI symptoms

Frequent infections are one of the most common symptoms of PI. It can be difficult to diagnose a person with PI. Symptoms can vary and are easily mistaken for common infections.

The Immune Deficiency Foundation (IDF) recommends that people ask their healthcare provider to check for possible PI if they have an infection that is:

  • Severe - requires hospitalization or intravenous antibiotics
  • Persistent - won’t completely clear up or clears very slowly
  • Unusual - caused by an uncommon organism
  • Recurrent - keeps coming back
  • Running in the family - other family members have also been prone to infection

Living with PI

Along with working with your healthcare team and taking your prescribed treatment, there are a few things you can do to help prevent infection:

  • Wash your hands
  • Take care of your teeth
  • Start healthy habits like exercising, eating healthy, and getting a good night’s sleep
  • Try to stay away from crowds and people who are sick
  • Discuss vaccinations with your healthcare provider

The above information is not intended to be medical advice. For medical advice, always speak with your healthcare provider.

Finding support*

Here are some organizations that support people living with PI. They can help from advocacy and research to disease information and resources.

MyIgSource.com from Takeda is a community built by people living with PI—for people living with PI—that provides educational experiences, resources, peer-to-peer support from patient advocates, and a community to connect with.

American College of Allergy, Asthma & Immunology (ACAAI) Explore the resources available through this wide network of healthcare professionals dedicated to improving the quality of patient care.

Immune Deficiency Foundation (IDF) created IDF Friends, a private social community created exclusively for patients and family members living with PI. People living with PI can join with others in the discussion forum, group forums, and chat rooms and share experiences through forum posts, pictures, and videos.

Jeffrey Modell Foundation (JMF), a global patient organization dedicated to PI, has created a Global PI Village® where patients, healthcare providers, families, and friends can visit the Internet Café to connect and share experiences at the Social Hub.

National Organization for Rare Disorders (NORD) is a rare disease organization that provides advocacy, research, education, and patient services in the US. See how they help and find out how you can get involved.

*The above links are provided as a resource. This is not an endorsement, and Takeda has no control over the content of any website not owned by Takeda.

Get health education support from OnePath

OnePath offers health education support from a Clinical Educator (CE). CEs are trained nursing professionals. They can help answer your questions about PI and your prescribed Takeda treatment.

Find OnePath tools to help you during treatment

Track how you or your loved one is feeling with our convenient Health Events Log in the OnePath App or Portal.

Frequently asked questions

Call your OnePath Patient Support Manager (PSM) if you feel you need more training on taking your treatment. To connect with your PSM, call Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660.

OnePath specialists are here to help answer questions about your condition and your Takeda treatment plan. Your Patient Support Manager (PSM) can connect you with one of these specialists. Call us Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660. You should also speak with your healthcare provider if you have specific questions about your health.

If you’ll be traveling with your Takeda medication, your dedicated Patient Support Manager (PSM) can help you prepare. Call your PSM as early as possible, at least 2-3 weeks before your trip. Your PSM can:

  • Put you in touch with your specialty pharmacy to discuss your travel plans. Your SP can:
    • Work with you to have extra medication shipped to you before you travel
    • Have your medication shipped to your destination
    • Help locate a site of care if your treatment must be given to you by a trained healthcare provider

Below you’ll find more tips you may want to consider when planning to travel with your medication:

  • Tell your healthcare provider about your plans. Follow any instructions they may provide you
  • Make a list of hospitals along your travel route and near your destination. Be sure to include their contact information
  • Always keep your treatment and supplies with you (if applicable). This includes storing these items in your carry-on luggage. That way, you’ll be able to use your items at any time on the way to your destination. Also, they’ll be better protected against temperature changes, rough handling, or loss
  • Pack extra medication just in case you experience a travel delay
  • If you’ll be flying, call your airline before the trip. Ask if it would be possible to keep your medication refrigerated during your flight, if applicable
  • Call the Transportation Security Administration (TSA) at least 72 hours before traveling. It can let you know what to expect at security checkpoints and if there are any special instructions you’ll need to follow. You can call the TSA toll-free at 1-866-289-9673 or visit them online here
  • When going through security, carry a copy of a travel letter describing your condition and the need for your medication
  • Always wear a medical ID bracelet or carry a medical ID card with you
  • Make sure to have all medication, supplies, and medical devices clearly labeled

If you have questions, speak with your Patient Support Manager (PSM). To connect with your PSM, call us Monday through Friday, 8:30 AM to 8:00 PM ET, at 1-866-888-0660.