FAQs About Hereditary Angioedema

Q: What causes hereditary angioedema?

A:

Hereditary angioedema (HAE) is a rare, potentially life-threatening genetic disorder caused by the deficiency of C1 esterase inhibitor, a protein in the blood that helps prevent swelling.

Q: If I have hereditary angioedema, will I pass it on to
my child?

A:

Hereditary angioedema (HAE) is a genetic disorder that may be passed on from parent to child. You have a 50% chance of passing it on to a child. Learn more about how HAE is passed down from parent to child.

Q: What are the symptoms of an HAE attack?

A:

Swelling of the skin (called a cutaneous attack) is the most common symptom and usually affects the hands, face, feet, and genitals. Attacks that affect the skin are often temporarily disfiguring, disabling, and painful. At the beginning of an attack, people with HAE usually feel some irritation or tingling that precedes the swelling. Swelling gradually builds over a period of one to two days.

Swelling in the stomach area is also common and can be accompanied by nausea, vomiting, and diarrhea. These attacks can also be excruciatingly painful. Because these attacks can resemble other surgical emergencies, many people with HAE undergo unnecessary exploratory abdominal surgery if HAE hasn’t yet been diagnosed.

Although less frequent, an attack that causes swelling in the throat (called a laryngeal attack) can be terrifying due to the risk of asphyxiation and the attack becoming a life-threatening situation.

Q: What are the triggers of an attack?

A:

HAE attacks are sometimes set off by a trigger. There are many known triggers of an HAE attack, including:

  • trauma
  • surgery
  • dental procedures
  • emotional stress

In addition, some common repetitive motions or hormonal fluctuations may cause an attack:

  • mowing the lawn
  • typing
  • menstruation
  • use of oral contraceptives that contain estrogen

Q: What are the early signs of an HAE attack?

A:

Some early warning signs are changes in the skin (skin may appear mottled, splotchy, or discolored), and/or tingling or irritation.

FAQs About CINRYZE® (C1 esterase inhibitor [human]) Therapy

Q: What is CINRYZE® (C1 esterase inhibitor [human])?

A:

CINRYZE is an injectable medicine that is used to help prevent swelling and/or painful attacks in teenagers and adults with HAE. It contains C1 esterase inhibitor, a protein in the blood that people with HAE lack. CINRYZE is the first and only FDA-approved C1 esterase inhibitor for routine prophylaxis against HAE attacks.

Q: Who should not use CINRYZE?

A:

You should not use CINRYZE if you have had life-threatening immediate hypersensitivity reactions, including anaphylaxis, to the product.

Q: What should I tell my healthcare provider before
using CINRYZE?

A:

Tell your healthcare provider about all of your medical conditions, including if you:

  • have an indwelling catheter/access device in one of your veins.
  • have a history of blood clots, heart disease, or stroke.
  • are taking birth control pills or androgens.
  • are pregnant or planning to become pregnant. It is not known if CINRYZE can harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if CINRYZE passes into your milk and if it can harm your baby.

Tell your healthcare provider and pharmacist about all of the medicines you take, including all prescription and non-prescription medicines such as over-the-counter medicines, supplements, or herbal remedies.

Q: How is CINRYZE made?

A:

CINRYZE is made from purified human blood that is collected from US plasma donors at US-licensed collection centers. CINRYZE goes through a complex purification process involving pasteurization and nanofiltration. CINRYZE may carry a risk of transmitting infectious agents, eg, viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

Q: Who might use CINRYZE?

A:

CINRYZE is an injectable medicine that is used to help prevent swelling and/or painful attacks in teenagers and adults with HAE.

Q: Will my insurance cover CINRYZE?

A:

Each person’s level of insurance coverage is different. ViroPharma created the Patient Service Center (PSC) to help guide people and their physicians in requesting and obtaining CINRYZE, and to help patients understand how their insurance coverage works. The Patient Service Center also pairs each person and physician with a Patient Care Coordinator to help provide the ongoing support they need. Learn more about the Patient Service Center and the CINRYZESolutions® Programs.

Q: How can CINRYZE therapy be administered?

A:

CINRYZE offers flexible options for administration by a healthcare provider or a caregiver, or self-administration by you, the patient.

Do not attempt to self-administer unless you have been taught how by your healthcare provider.

Q: Can there be side effects with CINRYZE?

A:

Yes. Allergic reactions may occur with CINRYZE. Call your healthcare provider or get emergency support services right away if you have any of the following symptoms:

  • wheezing
  • difficulty breathing
  • chest tightness
  • turning blue (look at lips and gums)
  • fast heartbeat
  • swelling of the face
  • faintness
  • rash
  • hives

In clinical studies, the most common side effects seen with CINRYZE were headache, nausea, rash and vomiting.

These are not all the possible side effects of CINRYZE.

Tell your healthcare provider about any side effect that bothers you or that does not go away. You can also report side effects to ViroPharma Medical Information at (866) 331-5637 or the FDA at 1-800-FDA-1088.

You can ask your healthcare provider for information that is written for healthcare providers.

Q: What is the dose of CINRYZE?

A:

A dose of 1000 Units can be administered every 3 or 4 days for routine prevention against angioedema attacks in people with HAE. Your doctor will prescribe the dose that you should take.

Q: Who will administer CINRYZE?

A:

Your healthcare provider will administer CINRYZE or teach you how to self-administer CINRYZE. Once you learn how to self-administer, you should always follow the specific instructions given by your healthcare provider. Talk to your healthcare provider before traveling. You should plan to bring enough CINRYZE during this time. Do not attempt to self-administer unless you have been taught how by your healthcare provider.

Q: How do I obtain CINRYZE?

A:

Once you have a prescription for CINRYZE, you can contact the Patient Service Center (PSC). To learn more about what the PSC and the CINRYZESolutions® Programs can do for you, we encourage you to speak with a Patient Care Coordinator at 1-877-945-1000 (toll-free) or send an email to inquiries@cinryzesolutions.com.

Q: How should I store CINRYZE?

A:

Do not freeze CINRYZE.

Store CINRYZE in a refrigerator or at room temperature between 36° to 77°F (2° to 25°C).

Keep CINRYZE in the original carton to protect it from light.

Do not use CINRYZE after the expiration date on the vial.

After preparing CINRYZE, you can store it at room temperature for up to 3 hours. If you have not used it within 3 hours, throw it away.

Only use the dissolved CINRYZE if it is colorless to slightly blue, clear, and free from visible particles.

Q: What else should I know about CINRYZE?

A:

Medicines are sometimes prescribed for purposes other than those listed here. Do not use CINRYZE for a condition for which it is not prescribed. Do not share CINRYZE with other people, even if they have the same symptoms that you have.

Because CINRYZE is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

This website summarizes the most important information about CINRYZE. If you would like more information, talk to your healthcare provider. You can ask your healthcare provider or pharmacist for information about CINRYZE that was written for healthcare professionals.

How CINRYZE® (C1 esterase inhibitor [human]) Can Help

CINRYZE contains C1 esterase inhibitor, a protein your body needs, to prevent HAE attacks.

Learn more ›

Connect with an HAE Mentor

Join the CINRYZEConnect™ Program to connect with a mentor who's also living with HAE.

Find out more ›

Indication
CINRYZE® (C1 esterase inhibitor [human]) is an injectable medicine that is used to help prevent swelling and/or painful attacks in teenagers and adults with Hereditary Angioedema (HAE).

Important Risk Information
You should not use CINRYZE if you have had life-threatening immediate hypersensitivity reactions, including anaphylaxis to the product.

Tell your healthcare provider about all of your medical conditions, including if you:

  • have an indwelling catheter/access device in one of your veins.
  • have a history of blood clots, heart disease, or stroke.
  • are taking birth control pills or androgens.
  • are pregnant or planning to become pregnant. It is not known if CINRYZE can harm your unborn baby.
  • are breastfeeding or plan to breastfeed. It is not known if CINRYZE passes into your milk and if it can harm your baby.

Tell your healthcare provider and pharmacist about all of the medicines you take, including all prescription and non-prescription medicines such as over-the-counter medicines, supplements, or herbal remedies.

Allergic reactions may occur with CINRYZE. Call your healthcare provider or get emergency support services right away if you have any of the following symptoms:

  • wheezing
  • difficulty breathing
  • chest tightness
  • turning blue (look at lips and gums)
  • fast heartbeat
  • swelling of the face
  • faintness
  • rash
  • hives

Because CINRYZE is made from human blood, it may carry a risk of transmitting infectious agents, e.g., viruses and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

The most common side effects seen with CINRYZE were headache, nausea, rash, and vomiting. These are not all the possible side effects of CINRYZE. Tell your healthcare provider about any side effect that bothers you or that does not go away. You can also report side effects to ViroPharma Medical Information at (866) 331-5637 or the FDA at 1-800-FDA-1088.

Medicines are sometimes prescribed for purposes other than those listed here. Do not use CINRYZE for a condition for which it is not prescribed. Do not share CINRYZE with other people, even if they have the same symptoms that you have.

Before starting CINRYZE, please read the accompanying Patient Information carefully and each time you get a refill. This information does not take the place of talking with your healthcare provider, and it does not include all of the important information about CINRYZE. If you have questions after reading this, ask your healthcare provider.

Please see the Full Prescribing Information.

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