Getting Started with Berinert If your doctor suspects that you may have hereditary angioedema (HAE), he or she will order a series of blood tests, which is the only way HAE can be confirmed.

Your doctor 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 HAE.

*Peer supporters are not healthcare professionals or medical experts. For medical questions, patients should contact their physicians.

Talk to your doctor about Berinert on-demand therapy

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 you and your doctor can determine if Berinert is right for you.

What to discuss with your doctor:

  1. Ask your doctor how Berinert works.
  2. Ask your doctor about the intravenous infusion process and if self-administration is appropriate for you.
  3. 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.
  4. Discuss other current HAE medications, including side effects, dosing, storage, and how effective they are in relieving or preventing an attack.
  5. Tell your doctor about all of the medications you’re taking, including over-the-counter medicines, vitamins, and herbal supplements.
  6. Download the HAE treatment plan to help facilitate this conversation.

Recognizing the onset of HAE attacks

HAE attacks may occur suddenly and without warning. However, many patients with HAE notice symptoms at the very early stage of an attack.

Some common signs of an HAE attack may include sudden mood changes, rash, irritability, aggressiveness, anxiety, extreme fatigue, or a tingling sensation of the skin where the swelling will begin.

Talk with your doctor to learn more about recognizing the first signs of an HAE attack and when to administer Berinert.

In addition to scheduling a self-administration training session with your doctor, Berinert provides materials and a video to help you get started.

Home Getting Started with Berinert
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Important Safety Information

Berinert®, C1 Esterase Inhibitor (Human), is used in adults and children to treat swelling and/or painful attacks of hereditary angioedema (HAE) affecting the abdomen, face or throat. 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. Inform your healthcare provider of all medications you are taking and of any medical conditions, especially any history of blood-clotting problems.

Blood clots have occurred in patients receiving Berinert. Tell your healthcare provider if you have a history of heart or blood vessel disease, stroke, or blood clots, or if you have thick blood, an indwelling catheter/access device in a vein, or have been immobile for some time. Certain medications, such as birth control pills, may also increase your risk of clotting problems.

Report to your physician or an emergency room any signs and symptoms of a blood clot, including pain and/or swelling or discoloration of an arm or leg, with warmth over affected area; unexplained shortness of breath; chest pain or discomfort that worsens on deep breathing; rapid pulse; and numbness or weakness on one side of the body.

In addition, report immediately any signs or symptoms of allergic reactions to Berinert, including hives, chest tightness, wheezing, difficulty breathing, turning blue, faintness, facial swelling and fast heartbeat.

If you have been trained to self-administer Berinert, immediately prepare the prescribed dose at the first symptoms of an attack. Seek immediate medical attention and do not begin to self-adminster if an HAE attack has progressed to a point where you will be unable to prepare or administer a dose 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.

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

In clinical studies, the most serious adverse reaction reported in subjects who received Berinert was an increased severity of the 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). Tell your healthcare provider about any side effect that bothers you or does not go away.

Because Berinert is made from human blood, the risk that it may transmit infectious agents, including viruses and theoretically, the agents of Creutzfeldt-Jakob Disease (CJD) and its variant form (vCJD), cannot be completely eliminated.

Please see full prescribing information for Berinert, including 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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