Table 6.
Severity1 of side effects of myasthenia gravis treatment2 by refractory group
| Side Effect Statement | Refractory with IVIg (N = 41), n, mean (SD) | Refractory without IVIg (N = 88), n, mean (SD) | Non-Refractory (N = 24) n, mean (SD) | P value3 |
|---|---|---|---|---|
| 1. …caused me to gain weight. | 32, 3.2 (0.7) | 69, 2.8 (0.8) | 14, 2.6 (0.9) | 0.068 |
| 2. …caused me to have muscle weakness, causing my legs to be unsteady. | 30, 2.9 (0.8) | 58, 2.7 (0.6) | 12, 2.6 (0.5) | 0.173 |
| 3. …caused me to have low blood pressure (hypotension). | 8, 2.8 (0.9) | 21, 2.7 (0.7) | 3, 2.0 (0.0) | 0.317 |
| 4. …caused me to lose weight. | 8, 2.8 (1.0) | 17, 2.5 (0.6) | 2, 2.0 (0.0) | 0.455 |
| 5. …caused me to have shortness of breath. | 24, 2.7 (0.8) | 51, 2.8 (0.7) | 11, 2.2 (0.4) | 0.051 |
| 6. …caused side effects such as acid reflux, heart burn, indigestion, esophageal ulcers, and irritable bowel syndrome. | 23, 2.5 (0.7) | 51, 2.9 (0.8) | 15, 2.7 (0.9) | 0.213 |
| 7. …caused severe side effects such as: aseptic meningitis, sepsis, pneumonia, pleural edema, fluid in the heart, allergic/anaphylactic reactions, or internal bleeding. | 12, 3.4 (0.8) | 16, 3.2 (0.7) | 3, 3.0 (0.0) | 0.551 |
| 8. …caused changes to my skin, such as bruising more easily, taking longer for wounds to heal, acne, stretch marks, and scalp burn. | 25, 2.8 (0.7) | 56, 2.7 (0.7) | 10, 2.6 (0.5) | 0.823 |
| 9. …caused me to have headaches or migraines. | 28, 2.6 (0.8) | 44, 2.6 (0.8) | 5, 2.2 (0.4) | 0.483 |
| 10. …caused muscle wasting. | 20, 2.5 (0.7) | 38, 2.4 (0.6) | 6, 2.3 (0.5) | 0.856 |
| 11. …caused vision changes, such as double vision. | 26, 2.8 (0.8) | 50, 2.9 (0.8) | 10, 2.5 (0.7) | 0.413 |
| 12. …caused watery eyes, increased saliva, nasal drainage, secretions, or mucus. | 25, 2.6 (0.6) | 56, 2.7 (0.7) | 16, 2.7 (0.8) | 0.717 |
| 13. …caused me to be fatigued. I felt weak, tired, drained, and exhausted while on this treatment. | 36, 2.8 (0.7) | 64, 2.9 (0.7) | 14, 2.6 (0.6) | 0.228 |
| 14. …caused side effects such as constipation, stomach cramps, intestinal pain and cramping, stomach bloating, and gas. | 28, 2.7 (0.7) | 64, 2.7 (0.8) | 12, 2.8 (0.9) | 0.960 |
| 15. …caused me to become forgetful, confused, and have problems concentrating. | 23, 2.5 (0.5) | 43, 2.7 (0.7) | 10, 2.3 (0.5) | 0.241 |
| 16. …caused me to have mood changes, which may include mood swings, anger or rage, hyperactivity, or lack of interest. | 26, 2.8 (0.8) | 56, 2.7 (0.8) | 11, 2.4 (0.5) | 0.292 |
| 17. …caused me to have fluid retention (such as edema or swelling) in my arms or legs. | 22, 2.6 (0.7) | 36, 2.5 (0.7) | 6, 2.8 (1.0) | 0.624 |
| 18. …caused me to have heart problems such as an increased heart rate, heart palpitations, or an irregular heartbeat. | 20, 2.7 (0.7) | 29, 2.6 (0.8) | 2, 2.5 (0.7) | 0.944 |
| 19. …caused changes to my laboratory values (blood tests) such as white blood cells, red blood cells, calcium, vitamin B12, creatinine, altered kidney function, or increased cholesterol. | 30, 2.5 (0.7) | 51, 2.5 (0.7) | 5, 2.4 (0.5) | 0.885 |
| 20. …caused my extremities (toes, fingers) to become tingly and sensitive to the cold. | 21, 2.3 (0.6) | 32, 2.4 (0.6) | 11, 2.6 (0.8) | 0.367 |
| 21. …caused a mild allergic reaction such as hives or rashes. | 18, 2.3 (0.6) | 22, 2.4 (0.7) | 5, 2.0 (0.0) | 0.374 |
| 22. …caused me to have diarrhea. | 30, 2.7 (0.8) | 61, 3.0 (0.8) | 14, 3.0 (0.9) | 0.436 |
| 23. …caused my face to bloat or swell. | 28, 2.7 (0.7) | 46, 2.7 (0.7) | 8, 2.8 (1.0) | 0.951 |
| 24. …made me feel lightheaded or dizzy. | 26, 2.3 (0.6) | 37, 2.4 (0.6) | 8, 2.5 (0.8) | 0.823 |
| 25. …caused me to become depressed, anxious, or nervous. | 25, 2.7 (0.7) | 49, 2.8 (0.8) | n, 2.4 (0.5) | 0.318 |
| 26. …decreased my immune response causing me to become sick more easily. | 29, 2.7 (0.7) | 56, 2.8 (0.8) | 7, 2.4 (0.5) | 0.428 |
| 27. …caused me to develop other medical conditions such as Cushing’s syndrome, osteoporosis, diabetes, cancer, cataracts or macular degeneration, adrenal insufficiency, and lipomatosis. | 20, 2.7 (0.7) | 28, 2.8 (0.8) | 4, 2.5 (0.6) | 0.625 |
| 28. …caused me to become infertile. | 0 | 3, 2.7 (1.2) | 0 | |
| 29. …caused me to have muscle cramps in my legs. | 32, 2.5 (0.8) | 61, 2.7 (0.7) | 18, 2.4 (0.8) | 0.343 |
| 30. …caused me aches and pain in various parts of my body. | 29, 2.4 (0.6) | 46, 2.7 (0.7) | 9, 2.6 (0.7) | 0.110 |
| 31. …caused me to have nausea and/or vomiting. | 20, 2.4 (0.6) | 35, 2.6 (0.7) | 5, 2.8 (0.8) | 0.318 |
| 32. …caused muscle twitching and eye twitching or eyelid drooping. | 24, 2.6 (0.7) | 54, 2.6 (0.8) | 13, 2.7 (0.9) | 0.919 |
| 33. …caused me to have hot flashes and to sweat profusely. | 25, 2.6 (0.8) | 43, 2.5 (0.7) | 10, 2.4 (0.5) | 0.594 |
| 34. …caused me to develop blood clots. | 5, 3.0 (1.0) | 6, 3.8 (0.4) | 0 | 0.093 |
| 35. …caused me to have high blood pressure (hypertension). | 19, 2.4 (0.6) | 26, 2.6 (0.8) | 3, 2.3 (0.6) | 0.579 |
1 Severity was assessed on a 1–4 scale, with 1 being ‘have not experienced this side effect’ and 4 being ‘very severe.’ Participants who endorsed an item with ‘1–have not experienced this side effect’ were excluded from the analysis
2 Five participants were excluded from this analysis. Four participants did not complete the demographic section, but completed Step 2. One participant completed the demographic section, but did not complete Step 2
3 P-values to compare the three groups are based on ANOVA for continuous variables