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Table 4 Severity and tolerability of side effects of Myasthenia Gravis treatment (N = 158)1

From: Understanding side effects of therapy for myasthenia gravis and their impact on daily life

Side Effect Statement

Overall Severity Sample2

Overall Tolerability Sample3

Patients who ever experienced side effect4

Severity2

Tolerability3

n

Mean (SD)

n

Mean (SD)

n

Mean (SD)

n

Mean (SD)

1. To gain weight

152

2.5 (1.1)

142

2.9 (1.0)

118

2.9 (0.8)

117

3.0 (0.9)

2. To have muscle weakness, causing my legs to be unsteady

151

2.2 (1.0)

136

2.7 (1.0)

102

2.7 (0.7)

99

2.8 (1.0)

3. To have low blood pressure

149

1.3 (0.8)

118

1.9 (1.0)

32

2.6 (0.8)

32

2.3 (1.0)

4. To lose weight

146

1.3 (0.7)

113

1.8 (1.0)

28

2.5 (0.7)

27

1.9 (0.9)

5. To have shortness of breath

145

2.0 (1.0)

124

2.7 (1.0)

88

2.7 (0.7)

83

3.0 (0.8)

6. Side effects such as acid reflux, heart burn, indigestion, esophageal ulcers, and irritable bowel syndrome

150

2.0 (1.1)

134

2.7 (1.0)

90

2.7 (0.8)

88

2.9 (0.8)

7. Severe side effects such as: aseptic meningitis, sepsis, pneumonia, pleural edema, fluid in the heart, allergic/anaphylactic reactions, or internal bleeding.

149

1.5 (1.0)

119

2.6 (1.4)

32

3.3 (0.7)

32

3.3 (1.0)

8. Changes to my skin

150

2.1 (1.0)

133

2.5 (1.0)

94

2.7 (0.7)

94

2.7 (0.8)

9. To have headaches or migraines

149

1.9 (1.0)

129

2.5 (1.1)

79

2.6 (0.8)

79

2.8 (0.9)

10. Muscle wasting

148

1.7 (0.8)

122

2.6 (1.2)

66

2.5 (0.6)

65

2.8 (0.9)

11. Vision changes, such as double vision

148

2.1 (1.1)

127

2.7 (1.0)

88

2.8 (0.8)

88

2.9 (0.9)

12. Watery eyes, increased saliva, nasal drainage, secretions, or mucus

149

2.1 (1.0)

134

2.4 (0.9)

101

2.7 (0.7)

99

2.6 (0.8)

13. To be fatigued. I felt weak, tired, drained

149

2.4 (1.0)

128

2.8 (0.9)

116

2.8 (0.7)

107

3.0 (0.8)

14. Side effects such as constipation, stomach cramps, intestinal pain and cramping, stomach bloating, and gas

148

2.2 (1.0)

134

2.7 (0.9)

106

2.7 (0.7)

104

2.8 (0.8)

15. To become forgetful, confused, and have problems concentrating

147

1.8 (0.9)

122

2.6 (1.0)

79

2.6 (0.7)

78

2.8 (0.9)

16. To have mood changes

148

2.1 (1.0)

130

2.7 (1.1)

95

2.7 (0.8)

94

2.9 (1.0)

17. To have fluid retention

146

1.7 (0.9)

122

2.5 (1.0)

66

2.6 (0.7)

65

2.7 (0.9)

18. To have heart problems

147

1.6 (0.9)

121

2.5 (1.2)

53

2.6 (0.8)

51

2.9 (1.0)

19. Changes to my laboratory values (blood tests)

149

1.9 (0.9)

129

2.3 (1.0)

87

2.5 (0.7)

85

2.5 (0.9)

20. My extremities (toes, fingers) to become tingly and sensitive to the cold

146

1.6 (0.8)

122

2.3 (1.0)

65

2.4 (0.7)

65

2.7 (0.8)

21. A mild allergic reaction such as hives or rashes

145

1.4 (0.7)

117

2.1 (1.0)

46

2.3 (0.6)

46

2.4 (0.8)

22. To have diarrhea

148

2.4 (1.1)

133

2.7 (1.0)

107

2.9 (0.8)

104

2.9 (0.9)

23. My face to bloat or swell

147

2.0 (1.0)

132

2.5 (1.0)

85

2.7 (0.7)

82

2.7 (0.9)

24. Feel lightheaded or dizzy

145

1.7 (0.8)

124

2.4 (1.0)

73

2.4 (0.6)

72

2.7 (0.7)

25. To become depressed, anxious, or nervous

146

2.0 (1.0)

126

2.6 (1.0)

85

2.7 (0.8)

84

2.9 (0.9)

26. Decreased my immune response

148

2.1 (1.0)

133

2.8 (1.0)

95

2.7 (0.8)

91

3.1 (0.7)

27. To develop other medical conditions

145

1.6 (0.9)

129

2.7 (1.3)

53

2.7 (0.8)

54

3.1 (1.0)

28. To become infertile

144

1.0 (0.3)

108

2.0 (1.3)

3

2.7 (1.2)

4

2.5 (1.3)

29. To have muscle cramps in my legs

150

2.2 (0.9)

137

2.6 (0.9)

113

2.6 (0.8)

111

2.7 (0.8)

30. Aches and pain in various parts of my body

146

1.9 (0.9)

125

2.4 (0.9)

86

2.6 (0.7)

83

2.7 (0.8)

31. To have nausea and/or vomiting.

146

1.6 (0.9)

119

2.4 (1.1)

61

2.5 (0.7)

60

2.8 (0.7)

32. Muscle twitching and eye twitching or eyelid drooping.

149

2.0 (1.0)

131

2.5 (0.9)

93

2.6 (0.8)

92

2.7 (0.7)

33. To have hot flashes and to sweat profusely

149

1.8 (0.9)

124

2.4 (1.0)

80

2.5 (0.7)

77

2.6 (0.8)

34. Develop blood clots

144

1.2 (0.7)

112

2.4 (1.4)

11

3.5 (0.8)

11

3.9 (0.3)

35. High blood pressure

143

1.5 (0.8)

121

2.3 (1.2)

48

2.5 (0.7)

50

2.7 (1.0)

  1. 1Four participants did not complete the demographic section in Part 1, but completed Part 2
  2. 2Severity was assessed on a 1–4 scale, with 1 being “have not experienced this side effect” and 4 being “very severe”
  3. 3Tolerability was assessed on a 1–4 scale, with 1 being “very tolerable” and 4 being “not at all tolerable”
  4. 4Patients who rated side effect as a “2-Mildly severe” or higher