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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

Headaches

Hypertension

Muscle cramps

Virilisation

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

Polycythaemia

Immediate withdrawal

3

Male

52

Danazol

200 mg QDa

26

Side effects

Headaches

Hypertension

Myalgia

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

Hypercholesterolaemia

Transaminase elevations,

Steatosis

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