Living with hereditary angioedema

With day-to-day demands, living with hereditary angioedema (HAE) can be challenging. An attack can throw off your schedule, make it difficult to hold a full-time job, and, even worse, put you in the hospital.

In addition to taking a prescribed hereditary angioedema treatment, such as Berinert, there are other things you can do to help minimize the impact of attacks.

Recognize and avoid triggers

The actual causes of hereditary angioedema attacks have not been established and seem to differ from person to person. However, people living with HAE often report that certain triggers can lead to attacks. These triggers may include stress, sickness, hormonal changes, mild trauma, dental work, surgical procedures, and certain medications, such as contraceptives containing estrogen and blood pressure medications known as ACE inhibitors.

To help identify your triggers, try keeping a treatment journal to record details about your attacks, including location, frequency, duration, and potential triggers. Be sure to share your journal with your doctor.

Once triggers are identified, it’s important to avoid situations that may bring them on. If stress is a trigger, try to avoid highly charged situations. Ask friends and family members for help and support when you feel overwhelmed, and use coping strategies that work for you. If certain medications are a problem, talk to your HAE specialist about alternatives.

Be prepared for an attack

For many people living with hereditary angioedema, an attack is not preventable. The only real option is to be well prepared when an attack occurs.

  • Educate family, loved ones, and coworkers about your condition
  • Inquire with your doctor regarding self-administration training and download support tools and resources here
  • Discuss your medical condition before any dental work or surgeries
  • Keep a diagnosis letter from your doctor with you at all times
  • Carry an emergency patient information card that communicates your medical needs
See how B.E.N.™ and our other resources can help you be prepared.

Important Safety Information

Berinert®, C1 Esterase Inhibitor (Human), is for the treatment of ongoing, acute attacks of hereditary angioedema (HAE) affecting the abdomen, face or throat in adults and adolescents. The safety and efficacy of Berinert in preventing HAE attacks have not been established.

Do not use Berinert if you have experienced life-threatening allergic reactions or severe hypersensitivity to the product. Immediately report to your physician or an emergency department any signs or symptoms of allergic reactions to Berinert, including hives, chest tightness, wheezing, turning blue, fast heartbeat, and shock. Also report signs and symptoms of thrombosis that occur after infusing: including swelling and pain in the limbs or abdomen, chest pain, shortness of breath, loss of sensation or motor power, or altered consciousness or speech.

Berinert can be self-administered if you have been trained and advised to do so by your healthcare provider. Seek immediate medical attention if an HAE attack has progressed to a point where you will be unable to prepare or administer Berinert.

Call your doctor right away if swelling is not controlled after use of Berinert.

If you self-administer to treat a laryngeal attack, immediately seek medical attention afterward. If you self-administer for an abdominal attack, inform your physician so that other possible causes can be ruled out.

Because Berinert is made from human blood, the risk that it may transmit infectious agents, including viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent, cannot be completely eliminated.

In clinical studies, the most serious adverse reaction reported in subjects who received Berinert was an increased severity of pain associated with HAE. In the placebo-controlled clinical trial, the most common adverse reaction reported more often among subjects who received Berinert than those receiving placebo was dysgeusia (a bad taste in mouth).

Berinert has not been evaluated in pregnant women or nursing mothers; inform your doctor if you are pregnant or are planning to become pregnant, or if you are breastfeeding or plan to breastfeed. The safety and effectiveness of Berinert have not been established in children under 12 or adults over 65 years of age.

Please see full prescribing information for Berinert, including 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.