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
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Important Safety Information

WARNING: Thrombosis (blood clots) 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 blood clots, your doctor will prescribe Hizentra at the minimum dose and infusion rate practicable and will monitor for signs of clotting events and hyperviscosity. Always drink sufficient fluids before infusing Hizentra.

See your doctor for a full explanation, and the full prescribing information for complete boxed warning.

Hizentra®, Immune Globulin Subcutaneous (Human), 20% Liquid, is a prescription medicine used to treat:

  • Primary immune deficiency (PI) in patients 2 years and older
  • Chronic inflammatory demyelinating polyneuropathy (CIDP) in adults

Treatment with Hizentra might not be possible if your doctor determines you have hyperprolinemia (too much proline in the blood), or are IgA-deficient with antibodies to IgA and a history of hypersensitivity. Tell your doctor if you have previously had a severe allergic reaction (including anaphylaxis) to the administration of human immune globulin. Tell your doctor right away or go to the emergency room if you have hives, trouble breathing, wheezing, dizziness, or fainting. These could be signs of a bad allergic reaction.

Inform your doctor of any medications you are taking, as well as any medical conditions you may have had, especially if you have a history of diseases related to the heart or blood vessels, or have been immobile for some time. Inform your physician if you are pregnant or nursing, or plan to become pregnant.

Infuse Hizentra under your skin only; do not inject into a blood vessel. Self-administer Hizentra only after having been taught to do so by your doctor or other healthcare professional, and having received dosing instructions for treating your condition.

Immediately report to your physician any of the following symptoms, which could be signs of serious adverse reactions to Hizentra:

  • Reduced urination, sudden weight gain, or swelling in your legs (possible signs of a kidney problem).
  • Pain and/or swelling or discoloration of an arm or leg, unexplained shortness of breath, chest pain or discomfort that worsens on deep breathing, unexplained rapid pulse, or numbness/weakness on one side of the body (possible signs of a blood clot).
  • Bad headache with nausea; vomiting; stiff neck; fever; and sensitivity to light (possible signs of meningitis).
  • Brown or red urine; rapid heart rate; yellowing of the skin or eyes; chest pains or breathing trouble; fever over 100°F (possible symptoms of other conditions that require prompt treatment).

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

The most common side effects in the clinical trials for Hizentra include redness, swelling, itching, and/or bruising at the infusion site; headache; chest, joint or back pain; diarrhea; tiredness; cough; rash; itching; fever, nausea, and vomiting. These are not the only side effects possible. Tell your doctor about any side effect that bothers you or does not go away.

Before receiving any vaccine, tell immunizing physician if you have had recent therapy with Hizentra, as effectiveness of the vaccine could be compromised.

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 www.fda.gov/medwatch, or call 1-800-FDA-1088.

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CSL Behring
Hizentra is manufactured by CSL Behring AG and distributed by CSL Behring LLC.
Hizentra® and MyHizentra® are registered trademarks of CSL Behring AG.
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© 2018 CSL Behring LLC. The product information presented on this site is intended for US residents only. HIZ-0316-MAR18