Living With PIDD

If you or someone you love has primary immunodeficiency disease (PI, also known as PIDD), it's still possible to live a full and active life. Thanks to new therapies and medical advances, people living with PI can go to school and work, socialize and play sports.

The following tips will help people with PIDD:

  • Work collaboratively with your doctor to manage your PI, and ask about treatments that can fit easily into your lifestyle
  • Eat a healthy diet. A well-balanced, nutritious diet may help your body fight against infection. Your doctor may suggest a special diet in times of illness or if you have food sensitivities
  • Adopt good hygiene habits. Bathe or shower regularly. Wash your hands before meals, after outings, and after using the bathroom. You may want to carry disposable hand wipes or antibacterial gel for times when soap and water are not available
  • Take proper care of cuts or scrapes, and clean them thoroughly
  • Visit your dentist regularly, and brush your teeth and floss daily

Managing PI can be quite involved. The resources below were specifically created to make it easier to manage your or your loved one's condition.

Hear Dr. Wasserman Discuss Dialogue after Diagnosis

“An important part of the discussion is how appropriately administered Ig therapy can be life-changing.”

- Richard L. Wasserman, MD, PhD

Hear Prescribers Discuss Topics Surrounding SCIg Therapy

IDF eHealthRecord personal health record PDF

Electronic Personal
Health Record:

The Immune Deficiency Foundation (IDF) eHealthRecord is a one-of-a-kind electronic personal health record developed for individuals and families living with primary immune deficiency diseases.

Hizentra Adult Convenience Kit

Hizentra Adult Convenience Kit

A Hizentra kit for adults, which includes a travel bag to hold supplies, and other items to make your treatment experience more convenient.

Important Safety Information

Important Safety Information

WARNING: Thrombosis (blood clotting) can occur with immune globulin products, including Hizentra. Risk factors can include: advanced age, prolonged immobilization, a history of blood clotting or hyperviscosity (blood thickness), use of estrogens, installed vascular catheters, and cardiovascular risk factors.

If you are at high risk of thrombosis, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor you for signs of thrombosis and hyperviscosity. Always drink sufficient fluids before administration.

Immune Globulin Subcutaneous (Human), Hizentra®, treats various forms of primary immunodeficiency (PI) in patients age 2 and over.

Tell your doctor if you have had a serious reaction to other immune globulin medicines or have been told you also have a deficiency of the immunoglobulin called IgA, as you might not be able to take Hizentra. You should not take Hizentra if you know you have hyperprolinemia (too much proline in your blood).

Infuse Hizentra under your skin only; do not inject into a blood vessel.

Allergic reactions can occur with Hizentra. If your doctor suspects you are having a bad allergic reaction or are going into shock, treatment will be discontinued. Immediately tell your doctor or go to the emergency room if you have signs of such a reaction, including hives, trouble breathing, wheezing, dizziness, or fainting.

Tell your doctor about any side effects that concern you. Immediately report symptoms that could indicate a blood clot, including pain and/or swelling of an arm or leg, with warmth over affected area; discoloration in arm or leg; unexplained shortness of breath; chest pain or discomfort that worsens with deep breathing; unexplained rapid pulse; and numbness or weakness on one side of the body. Your doctor will also monitor symptoms that could indicate hemolysis (destruction of red blood cells), and other potentially serious reactions that have been seen with Ig treatment, including aseptic meningitis syndrome (brain swelling); kidney problems; and transfusion-related acute lung injury.

The most common drug-related adverse reactions in the clinical trial for Hizentra were swelling, pain, redness, heat or itching at the site of injection; headache; back pain; diarrhea; tiredness; cough; rash; itching; nausea and vomiting.

Hizentra is made from components of human blood. The risk of transmission of infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

Before being treated with Hizentra, inform your doctor if you are pregnant, nursing or plan to become pregnant. Vaccines (such as measles, mumps and rubella) might not work well if you are using Hizentra. Before receiving any vaccine, tell the healthcare professional you are being treated with Hizentra.

Please see full prescribing information for Hizentra, including boxed warning and the patient product information.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit, or call 1-800-FDA-1088.

CSL Behring
Hizentra is manufactured by CSL Behring AG and distributed by CSL Behring LLC.
Hizentra® is a registered trademark of CSL Behring AG.
© 2018 CSL Behring LLC. The product information presented on this site is intended for US residents only. HIZ/09-12-0016k(1) 9/2015