Friday Jun 06, 2025

Kelly: Living With My HAE

Join us for another episode of You, Me, And HAE! Our host, Debbie, welcomes Kelly as they talk about their experiences living with hereditary angioedema (HAE), from identifying swell triggers to staying prepared for an HAE swell. Kelly is also joined by Dr Jack Eades, an allergy/immunology specialist with a focus on managing HAE. Together, they highlight the importance of regularly talking to your doctor about your HAE. Last, Kelly shares her personal journey using RUCONEST® (C1 esterase inhibitor [recombinant]), an on-demand HAE treatment for people over the age of 12 years, to manage acute swells and discusses how RUCONEST helps her get back to the things that matter.  

If you would like to learn more about HAE or RUCONEST, we invite you to sign up at www.ruconest.com/contact/ to receive up-to-date information from Pharming Healthcare, Inc. or any of the company affiliates. 

WHAT IS RUCONEST? 

RUCONEST® (C1 esterase inhibitor[recombinant]) is an injectable prescription medicine that is used to treat swelling and/or painful attacks due to hereditary angioedema (HAE) in adult and adolescent patients over the age of 12. 

IMPORTANT SAFETY INFORMATION 

Do not use RUCONEST if you have experienced life-threatening immediate hypersensitivity reactions, including anaphylaxis, to RUCONEST or to any other C1 esterase inhibitor (C1-INH) product. Call your healthcare professional or the emergency department right away if you experience: wheezing, difficulty breathing, chest tightness, turning blue (look at lips and gums), fast heartbeat, swelling, faintness, rash or hives. A serious side effect of life-threatening hypersensitivity (anaphylaxis) was reported in a clinical study. 

Do not use RUCONEST if you have a known or suspected allergy to rabbits or rabbit-derived products. Tell your healthcare provider about all your medical conditions, including if you have a known allergy to rabbits. 

Before starting RUCONEST, tell your healthcare provider about any other medications you are taking, as some medications, such as birth control pills and certain androgens, can increase risk of clotting problems. Blood clots have occurred in patients receiving plasma-derived C1-INH product. Also tell your healthcare provider if you are pregnant, breastfeeding, or planning to do so. 

The most common side effects patients experienced during clinical studies include headache, nausea and diarrhea. These are not all the possible side effects of RUCONEST. Tell your healthcare provider about any side effect that bothers you or does not go away. You can also report negative side effects to Pharming Medical Affairs at (800) 930-5221, or contact the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch

If symptoms persist, a second dose of RUCONEST may be taken at your recommended dose. Do not take more than two doses within 24 hours. 

For more information, please see the full Prescribing Information including the Patient Product Information 

DISCLAIMER 

This program is sponsored by Pharming Healthcare, Inc. The speakers have been compensated for the presentation of this information. The information contained within this podcast is for educational purposes only and is not intended to be medical advice. This episode will discuss experiences of people living with HAE. It is important to recognize that these experiences may not be representative, as every person with HAE has a unique disease course. 

EPISODE REFERENCE LIST 

  1. Busse PJ, Christiansen SC, Riedl MA, et al. US HAEA Medical Advisory Board 2020 guidelines for the management of hereditary angioedema. J Allergy Clin Immunol Pract. 2021;9(1):132-150.e3. doi:10.1016/j.jaip.2020.08.046 
  2. Maurer M, Magerl M, Betschel S, et al. The international WAO/EAACI guideline for the management of hereditary angioedema-The 2021 revision and update. Allergy. 2021;77(7):1961-1990. doi:10.1111/all.15214 
  3. Kaplan AP, Kusumam J. Pathogenesis of hereditary angioedema: the role of bradykinin-forming cascade. Immunol Allergy Clin North Am. 2017;37(3):513-525. doi:10.1016/j.iac.2017.04.001 
  4. Bernstein JA, Tyson C, Relan A, Adams P, Magar R. Modeling cost-effectiveness of on-demand treatment for hereditary angioedema attacks. J Manag Care Spec Pharm. 2020;26(2):203-210. doi:10.18553/jmcp.2019.19217 
  5. Fields T, Ghebrehiwet B, Kaplan AP. Kinin formation in herediatry angioedema plasma: evidence against kinin derivation from C2 and in support of “spontaneous” formation of bradykinin. J Allergy Clin Immunol. 1983;72(1):54-60. doi:10.1016/0091-6749(83)90052-0 
  6. Ruconest. Prescribing information. Pharming Healthcare Inc; 2020. 
  7. Bernstein JA, Relan A, Harper JR, Riedl M. Sustained response of recombinant human C1 esterase inhibitor for acute treatment of hereditary angioedema attacks. Ann Allergy Asthma Immunol. 2017;118(4):452-455. doi:10.1016/j.anai.2017.01.029 
  8. Zuraw B, Cicardi M, Levy RJ, et al. Recombinant human C1-inhibitor for the treatment of acute angioedema attacks in patients with hereditary angioedema. J Allergy Clin Immunol. 2010;126(4):821-827.e14. doi:10.1016/j.jaci.2010.07.021 

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