Table 4.
Severity and tolerability of side effects of Myasthenia Gravis treatment (N = 158)1
| 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) |
1Four participants did not complete the demographic section in Part 1, but completed Part 2
2Severity was assessed on a 1–4 scale, with 1 being “have not experienced this side effect” and 4 being “very severe”
3Tolerability was assessed on a 1–4 scale, with 1 being “very tolerable” and 4 being “not at all tolerable”
4Patients who rated side effect as a “2-Mildly severe” or higher