Talking to your doctor

Talking to your doctor about hereditary angioedema

Hereditary angioedema (HAE) is fairly rare. It affects only about 1 in 10,000 to 50,000 individuals. And because HAE can resemble other conditions, such as allergies or stomach problems, diagnosis is often delayed. It typically takes around 10 years between the onset of symptoms and diagnosis.

Because delay of diagnosis is so common, it’s important to talk to your doctor about HAE as a possible cause of your symptoms.

Be prepared to discuss these topics with your doctor:

  1. 1.Any family history of HAE
  2. 2.Your personal health history, as well as any medications you may be taking
  3. 3.Symptoms that may point to the disease.
    Learn more about common HAE symptoms
  4. 4.Specifics about an attack, such as trigger, location, frequency, and duration. It may be helpful to record this information in an interactive treatment journal
  5. 5.The impact HAE attacks are having on your life
  6. 6.Your comfort level with learning to self-administer Berinert via intravenous infusion.

The more information you can give to your doctor, the better.

If your doctor suspects you may have hereditary angioedema, he or she will order a series of blood tests, which is the only way HAE can be confirmed. Your physician may then refer you to a specialist who knows about HAE, such as an allergist or immunologist. If your doctor has trouble locating a specialist, you may want to contact the US Hereditary Angioedema Association. This organization maintains a robust list of doctors across the country who treat people living with hereditary angioedema.

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Talking to your doctor about Berinert

If you are experiencing acute abdominal, facial, or laryngeal attacks of hereditary angioedema, you may be ready to explore treatment options or look for an alternative to what you are currently taking.

Berinert is one therapy you may want to consider, but only your doctor can tell you if Berinert is right for you. To help make the most of your doctor visit:

  • Ask your doctor how Berinert works
  • Ask your doctor about the intravenous infusion process
  • Tell your doctor about all of the medications you’re taking, including over-the-counter medicines, vitamins, and herbal supplements
  • Discuss your current HAE medications, including side effects, dosing, storage, and how effective it is in relieving an attack
  • Explain specifics about your attacks (such as frequency and location) and how you work to manage them so your doctor can determine which treatment option is right for you
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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.