Table 2.
Physical symptoms of GCA in relation to disease and its treatment
| Domain 1: physical symptoms |
|---|
| A. Headache and scalp sensitivity |
| I had this radiating head, like horns coming out of the side of my head and lumps at the temples. (AU 71-year-old female) |
| I had terrible headaches; it was like somebody putting a steel cap and screwing it tight. (UK 72-year-old female) |
| B. Ear and throat pain |
| My ears were sore. Deep within the ears was pain, a fairly constant headache. (AU 79-year-old male) |
| C. Jaw pain and stiffness, chewing and eating |
| I could not chew and I couldn’t use my jaw, it hurt to talk, it hurt to move it. (UK 75-year-old female) |
| It was really, really difficult to eat. All I could have was soups, liquid foods. (UK 64-year-old female) |
| D. Weight and appetite change |
| I didn’t feel very well, which is unusual for me, and no energy and no appetite. (UK 79-year-old female) |
| I dropped weight within about 2 or 3 weeks; it just kept getting worse. (AU 66-year-old female) |
| I was getting up at 3 a.m. because I was so hungry. They [steroids] did make me very, very hungry. (UK 72-year-old male) |
| E. Change in appearance due to treatment or disease |
| My appearance has been a big thing to me, and I can't wear any of my clothes. I've got this huge stomach and skinny arms that you get with long steroid use. (AU 71-year-old female) |
| F. Skin and hair symptoms |
| But as the steroids take hold, if I brushed against a chair, the skin would lift off. (AU 79-year-old male) |
| G. Dizziness, unsteadiness, weakness |
| They didn’t like leaving me, cos I was very dizzy and falling around and losing my balance. (UK 83-year-old female) |
| I’m a bit weaker. I lack energy, mental and physical, compared with how I was. (AU 79-year-old male) |
| H. Visual symptoms |
| Double vision, out of focus, feeling dizzy; it was very frightening. (AU 71-year-old female) |
| In the bottom right hand corner of the eye as though someone was throwing a net over the eye. (AU 85-year-old male) |
| I woke up and realised that I’d lost, not all the sight, but part of the sight of my right eye. (UK 79-year-old female) |
| Well it started with my left eye going into a negative mode… almost black and white. (UK 82-year-old male) |
| I. Joint and muscle symptoms |
| I had so much stiffness in my joints and muscles and pain—it was unbelievable. I ache all across my shoulders, my back, and not only my hips but down my legs. (AU 71-year-old female) |
| J. Systemic problems, lethargy, sweats and flu-like symptoms |
| I did go through the terrible sweats in the night. I was getting up, changing my clothes three times. (UK 72-year-old female) |
| I felt like hell getting out of bed. My shoulders ached. My head ached and I just felt fluey. (UK 72-year-old male) |
| K. Breathing problems, chest or gastric pain or discomfort |
| In the night I had strange pains in the middle of my chest for about an hour radiating to the back. (AU 71-year-old female) |
| There's a bloating feeling around the stomach, lungs, chest area. (AU 85-year-old male) |
Quotes supporting the ‘Physical symptoms’ domain and 11 subthemes.