Patient description of other residual symptoms
| Other residual symptoms following iTTP episode . | ||
|---|---|---|
| Symptom . | Patient description of symptoms . | • Illustrative quotes . |
| Social health | Don’t like to be around a lot of people | •“I would rather not socialize with people because I don’t want to have to work so hard to pay attention to their conversation and remember things” —patient 22, OH, Focus Group•“It’s like so many people get to talking at 1 time and I stand there and I just, just be tired… it seems like 10 000 people is talking at 1 time and it does something to my brain, so it, it’s crazy, it’s hard” —patient 15, OK, Focus Group |
| Vision and head | Headaches, migraines, vision problems, blurry vision, and cataracts | •“My migraine auras when I do have them…I can’t drive…I can talk, but I can’t do much else because my vision is impaired” —patient 22, OH, Focus Group |
| Sensory | Numbness in body, body aches, dizziness, hand writing changes, nerves and spine problems, and restless legs | •“Body aches and soreness. It doesn’t matter if I’ve fallen [or not] I hurt everywhere” —patient 2, OK, Focus Group |
| Physical changes | Immune system seems lower, food allergies, arthritis, high cholesterol, high blood pressure, unable to walk, frequent urination, diabetes, deep vein thrombosis, weakness in ankles, painful knee, muscle spasms, and joint pain | •“I’ve noticed I’ve had muscle loss, I tend to fall easier” —patient 25, OH, Focus Group |
| Hair changes | Hair loss, change in hair texture | •“The Rituximab, it makes your hair different…change of hair texture…it’s permanent” —patient 9, OK, Focus Group |
| Weight | Weight gain, increase in appetite, eat more now | •“Prednisone never helps you stay skinny…I gained weight” —patient 40, OK, Interview |
| Lung problems | Shortness of breath | •“I do have issues with shortness of breath with exertion” —patient 39, OH, Interview |
| Sexual changes | Celibacy, low sex drive | •“Well I know the low libido has affected mine…relationships” —patient 14, OK, Focus Group |
| Pregnancy | Fear/trigger for relapse, impact on family planning | •“I’m like should I even try to have another one—I want to—but it’s definitely going to be like high risk…but everyone tells you, you know pregnancy is a trigger” —patient 44, OH, Interview |
| Claustrophobia | Don’t like being in small spaces | •“I could fly on a good-sized plane…just not the small ones” —patient 1, OK, Focus Group |
| Other residual symptoms following iTTP episode . | ||
|---|---|---|
| Symptom . | Patient description of symptoms . | • Illustrative quotes . |
| Social health | Don’t like to be around a lot of people | •“I would rather not socialize with people because I don’t want to have to work so hard to pay attention to their conversation and remember things” —patient 22, OH, Focus Group•“It’s like so many people get to talking at 1 time and I stand there and I just, just be tired… it seems like 10 000 people is talking at 1 time and it does something to my brain, so it, it’s crazy, it’s hard” —patient 15, OK, Focus Group |
| Vision and head | Headaches, migraines, vision problems, blurry vision, and cataracts | •“My migraine auras when I do have them…I can’t drive…I can talk, but I can’t do much else because my vision is impaired” —patient 22, OH, Focus Group |
| Sensory | Numbness in body, body aches, dizziness, hand writing changes, nerves and spine problems, and restless legs | •“Body aches and soreness. It doesn’t matter if I’ve fallen [or not] I hurt everywhere” —patient 2, OK, Focus Group |
| Physical changes | Immune system seems lower, food allergies, arthritis, high cholesterol, high blood pressure, unable to walk, frequent urination, diabetes, deep vein thrombosis, weakness in ankles, painful knee, muscle spasms, and joint pain | •“I’ve noticed I’ve had muscle loss, I tend to fall easier” —patient 25, OH, Focus Group |
| Hair changes | Hair loss, change in hair texture | •“The Rituximab, it makes your hair different…change of hair texture…it’s permanent” —patient 9, OK, Focus Group |
| Weight | Weight gain, increase in appetite, eat more now | •“Prednisone never helps you stay skinny…I gained weight” —patient 40, OK, Interview |
| Lung problems | Shortness of breath | •“I do have issues with shortness of breath with exertion” —patient 39, OH, Interview |
| Sexual changes | Celibacy, low sex drive | •“Well I know the low libido has affected mine…relationships” —patient 14, OK, Focus Group |
| Pregnancy | Fear/trigger for relapse, impact on family planning | •“I’m like should I even try to have another one—I want to—but it’s definitely going to be like high risk…but everyone tells you, you know pregnancy is a trigger” —patient 44, OH, Interview |
| Claustrophobia | Don’t like being in small spaces | •“I could fly on a good-sized plane…just not the small ones” —patient 1, OK, Focus Group |