Skip to main content

Open Access Androgen use in hereditary angioedema: A critical appraisal and approaches to transitioning from androgens to other therapies


Hereditary angioedema (HAE) is a rare genetic disorder clinically characterized by recurrent attacks of subcutaneous and mucosal swelling. Attenuated androgens have been a prophylactic treatment option to reduce the frequency of HAE attacks for > 4 decades. However, the advent of effective on-demand treatments and highly effective, more tolerable, long-term prophylactic therapies has led to a decline in the use of attenuated androgens for the management of HAE in regions where newer therapies are available. A consensus about the best approach for discontinuing or tapering off attenuated androgen therapy does not exist.


To develop a consensus on androgen tapering for patients with HAE.


We sent an open-ended survey about androgen tapering to 21 physicians who treat HAE, 12 of whom responded. We reviewed the collective experience of the participating physicians in combination with results from a literature review on the topic.


The survey and literature review underscored potential concerns related to rapid androgen withdrawal in patients with HAE, including physician and patient concerns that the frequency and severity of attacks would abruptly worsen. In addition, discontinuation of attenuated androgens may have the potential for transient adverse effects, such as an increase in the rate of attacks or effects related to hormone withdrawal. Our survey showed that physicians often taper androgens to prevent increases in HAE attacks and possible withdrawal complications.


Based on both experiences of the physicians who responded to our survey and reports in the endocrine literature, we provided recommendations for androgen tapering. However, we noted that the likelihood of adverse effects due to androgen withdrawal in patients with HAE is poorly understood and requires further study.

Keywords: : androgen tapering; HAE; anabolic androgenic steroids; androgen withdrawal; attenuated androgens; danazol; hereditary angioedema; side effects; tapering

Document Type: Research Article

Affiliations: 1: From the Asthma and Allergy Specialists, Charlotte, North Carolina; 2: Institute for Asthma and Allergy, Chevy Chase, Maryland; 3: Department of Medicine and Pediatrics, Penn State University, Hershey, Pennsylvania; 4: Allergy Section, Division of Immunology, Department of Internal Medicine, University of Cincinnati; 5: Clinical Research Center of Alabama, Birmingham, Alabama; 6: BioCryst Pharmaceuticals Inc., Durham, North Carolina; and 7: Division of Rheumatology, Allergy and Immunology, Department of Medicine, University of California San Diego, La Jolla, California

Publication date: January 1, 2021

This article was made available online on December 21, 2020 as a Fast Track article with title: "Androgen use in hereditary angioedema: A critical appraisal and approaches to transitioning from androgens to other therapies".

More about this publication?
  • Allergy and Asthma Proceedings is a peer reviewed publication dedicated to distributing timely scientific research regarding advancements in the knowledge and practice of allergy, asthma and immunology. Its primary readership consists of allergists and pulmonologists.

    The goal of the Proceedings is to publish articles with a predominantly clinical focus which directly impact quality of care for patients with allergic disease and asthma and by having the potential to directly impact the quality of patient care. AAP welcomes the submission of original works including peer-reviewed original research and clinical trial results. Additionally, as the official journal of the Eastern Allergy Conference (EAC), AAP will publish content from EAC poster sessions as well as review articles derived from EAC lectures.

    Featured topics include asthma, rhinitis, sinusitis, food allergies, allergic skin diseases, diagnostic techniques, allergens, and treatment modalities. Published material includes peer-reviewed original research, clinical trials and review articles.

    Articles marked "F" offer free full text for personal noncommercial use only.

    The journal is indexed in Thomson Reuters Web of Science and Science Citation Index Expanded, plus the National Library of Medicine's PubMed service.
  • Editorial Board
  • Information for Authors
  • Submit a Paper
  • Information for Advertisers
  • Reprint Requests
  • Commercial level: Permission to use content
  • Ingenta Connect is not responsible for the content or availability of external websites
  • Access Key
  • Free content
  • Partial Free content
  • New content
  • Open access content
  • Partial Open access content
  • Subscribed content
  • Partial Subscribed content
  • Free trial content