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Table 2 Patient characteristics, AA treatment, reasons for discontinuation and discontinuation strategy

From: Attenuated androgen discontinuation in patients with hereditary angioedema: a commented case series

Case Sex Age, years AA Dose prior to discontinuation Time on AAs prior to discontinuation, years Reason for discontinuation Discontinuation strategy
1 Female 50 Danazol 200 mg QDa 28 Side effects at high doses and insufficient control of HAE attacks at lower dose
Muscle cramps
Weight gain
Severe breakthrough attacks at lower AA doses
Immediate withdrawal
2 Male 34 Oxandrolone 5 mg QDb 1.5 Side effects and insufficient control of HAE attacks
Immediate withdrawal
3 Male 52 Danazol 200 mg QDa 26 Side effects
Weight gain
Reduced to 100 mg QD for 2 weeks, then 100 mg QOD for 2 weeks, and finally 100 mg/week for 2 weeks, at the same time as 1,000 U pdC1-INH twice/week was introduced
4 Male 76 Danazol 300 mg QDa 18 Side effects and contraindications
Treated with angiotensin converting enzyme (ACE) inhibitors and statins, the latter of which resulted in rhabdomyolysis and acute kidney failure
Hypertension and high blood cholesterol
Immediate withdrawal
5 Female 64 Danazol 150 mg QDc 14 Contraindications
Treatment required for hormone-sensitive breast cancer
Surgery, radiotherapy and exemestane
Immediate withdrawal
6 Male 31 Danazol 200 mg five times/weeka 13 Insufficient control of HAE attacks Maintain danazol 200 mg five times/week for 2 weeks during the introduction of lanadelumab 300 mg every 14 days
7 Male 59 Danazol 100 mg QDa 9 Improved control of HAE attacks and side effects
Transaminase elevations,
Multifocal leukoencephalopathy
Immediate withdrawal
8 Male 48 Oxandroloned 5 mg QD 15 Participation in a clinical trial Immediate withdrawal (2 weeks prior to screening visit for study)
9 Female 43 Danazol 100 mg QODa 29 Unplanned pregnancy Immediate withdrawal
10 Male 62 Danazol 100 mg QDa 36 Loss of access to androgens Reduced to 100 mg QOD for 1 week, then 100 mg/3 days for 3 weeks
  1. QD: every day; QOD: every other day
  2. a Danazol dose modifications made to manage breakthrough attacks and/or identify the minimal effective dose
  3. b Starting dose of 5 mg QD was increased to 7.5 mg because abdominal attacks occurred every 2 weeks. Oxandrolone was stopped for 3 months because of polycythaemia and was reintroduced at 5 mg QD after resolution of this side effect
  4. c Reduced from 600 mg QD when the menopause started
  5. d Danazol not tolerated because of mood disturbances