Table 2.

Ongoing symptoms reported by patients treated for giant cell arteritis

Fatigue	I know my energy levels have never been the same since I had it. I’ve never been able to do what I did before. (Sue, 67, 3 years 9 months since diagnosis) I was having to lie down at meetings I felt so exhausted so intense fatigue, not just feeling a bit sleepy but intense fatigue. (June, 75, 2 years since diagnosis) You feel—you’re washed out, you know? Like you’re tired, very tired and washed out. That’s what it feels like. (Edward, 70, 3 years since diagnosis) I’m totally exhausted all day and virtually every day. (Keith, 71, 3 years 6 months since diagnosis)
Pain	The only thing I’ve ever had, really, that is persistent, is this head pain. And it’s—it’s quite strange. It’s almost like a weight on my head. It isn’t a headache, but nobody seems to understand that. It’s—it’s, err, a pressure pain. […] occasionally I get a headache but very rarely. And I can tell the difference. You know, it’s just a totally different thing. (Iris, 74, 4 years 7 months since diagnosis) The only concern that I’ve got is that at night, I get some symptoms […] tenderness round the ear and just on the side of the ear […] it only ever comes at night when I’m lying down and not, not, not every night. (Neville, 74, 12–18 months since diagnosis) I’ve had muscle pain ever since. […] That’s 15 months after finishing taking them (steroids) I’ve still got muscle pain. (Christopher, 71, 2 years 8 months since diagnosis) The thing that I got that nobody else seems to have been too bothered by, was this sensitivity of the head and that was absolutely awful, because I couldn’t sit anywhere, under any form of air conditioning, or in any form of draught on the shoulders or neck or head. (Barbara, 71, 2 years 10 months since diagnosis)
Sight loss	I’ve lost half—well, three quarters sight in my one eye, which was very, very traumatic. Very traumatic indeed. […] losing your sight is like a bereavement, and I know that sounds illogical to somebody who’s not experienced it, but to me it was like I’d experienced another death. I was so, so devastated […] I just feel vulnerable. (Gloria, 72, 6 years since diagnosis) Overnight, as I said, my sight went in my left eye […] I feel I’m fortunate; some people wouldn’t think so, but I have only got part sight in my left eye. I have nothing at all in my right.(Clare, 75, 2 years since diagnosis)
Visual symptoms	Certainly within the last few months, since I’ve been diagnosed, my vision’s changed quite a lot […] I’ve noticed that I have these blind spots, you know, where I have no vision at all […] For instance, if I’m looking at the television – looking at somebody’s face on television, I don’t see the top of their head, and that didn’t happen before. (Mary, 72, 2 months since diagnosis) The side effects of this steroid are absolutely hideous […] about 4 weeks ago, my eye—right eye started to fade and fade and fade and fade and today, as we speak, in my right eye, I can only distinguish light and dark. I can’t distinguish any shapes or people or anything but I’ve been to the optician and it’s not blindness, as such. She says it’s a, the cataract has suddenly just grown right across my eye and it’s gone like that in a matter of weeks. (Sheila, 73, 11 months since diagnosis) I’d been suffering a little from blurred vision but then I’d put that down to age related and I still do have blurry vision but again, it’s difficult to say, ‘cos you get this sort of thing as you get older, that it was anything to do with this condition or not. (Dennis, 69, 2 years 6 months since diagnosis)
Awareness of bone thinning	They’ve also diagnosed me now with osteo-, is it osteoporosis? The thinning of the bones. (Laurence, 72, 1 year 7 months since diagnosis) So I went for a bone density scan and, and discovered that, you know, I was osteopenia, but everything else was alright. (Barbara, 71, 2 years 10 months since diagnosis)
Changes in mood	I’m a little bit fed up. I get very fed up because… just fed up with my body really (mmm) and it has debilitated my whole life now. (Sheila, 73, 11 months since diagnosis) I thought my life was over actually, I thought I can’t go on living like this, I think I’d rather just die, it was no life at all. (June, 75, 2 years since diagnosis) I think I might have been marginally buoyed along by the steroid pills as well. […] I think also that it made me quite – I wouldn’t say happy but, settled in a funny sort of way, you know? (Barbara, 71, 2 years 10 months since diagnosis) Psychologically, I suppose, you just feel down a bit and you’re really fed up […] I’m afraid, under the steroids it was really nasty. I’m normally a happy, probably as you gather, chatty bunny. I became quite an intolerant bastard and wouldn’t put up with anything […] I honestly believe that when they upped the dose I should have been locked up […] kept out of people’s way. (Peter, 70, 6 years 8 months since diagnosis)
Changes in appearance	I think at first you are a bit shaken because, err, your face does get a bit bloated and I’ve got some photographs I won’t let anyone see, err, because my face does—I don’t look like myself. My face looks too bloated. (Rose, 73, 1 year since diagnosis) I’m huge now […] I’ve now put on two and a half stone […] The sweating was constant. That was awful. It was worse—far worse than the menopause ever was. Because I used to use a bath sheet to save washing the sheets - lie on a bath sheet and wear a T-shirt, cotton T-shirt, to soak the sweat up. […] and I didn’t really want to go anywhere because my head was wet, you know, my hair was wet, sweating from my head. (Linda, 68, 8 months since diagnosis) The skin seems to be that thin it seems to be that it’s almost like tissue so that if I do get just a small bang on it I’ve got a huge bruise there so all my arms are covered in bruises. (Robert, 92, 2 years since diagnosis) Just seeing my, my face - not so much my body at that point but my face morphing into a frog or a chipmunk. And then the hair down the sides of my face […] I had fat round, round the bottom of my neck […] It was just life, life changing. And my hair then went into—I’ve got curly hair but it went into wiry, very tight curls. It was the most peculiar thing but that was the steroids again… (Cressida, 62, 5 years 5 months since diagnosis) With the steroids […] I blew up like a balloon. […] It was the face, really. I mean I - my collar size went up about three sizes in a very short time. […] It was a damn nuisance. I had to buy a load of new shirts. […] I mean I’d got a football on my shoulders really. […] I felt embarrassed, really […] As I say, I couldn’t fasten my shirt collars. (Keith, 71, 3 years 6 months since diagnosis)
Changes in sleep	Probably asleep by 10ish and then about half eleven, or midnight, I get—my feet are boiling hot and throbbing like billy-o and a hideous rash. […] In the daytime, when I’m walking around, my feet, although they look pretty hideous with a bit of a rash on and that, they don’t seem to swell up and throb so much. […] So that goes on nearly all night, every night. Consequently, I’m tired in the day. (Sheila, 73, 11 months since diagnosis) When I was on the 60 mg, I’d, I’d get an hour and half, if I was lucky, and then I’d be awake for an hour and a half and then, you know, maybe another hour; something like that, so really bad sleeping patterns right the way through. (Barbara, 71, 2 years 10 months since diagnosis) I couldn’t sleep at high doses. It was a bit, yeah, wearing. But then, when I got below—when I got to 20 and below, that got a lot better. (Yvonne, 65, 4 years 7 months since diagnosis)
Not feeling normal	I do have, I wouldn’t what I call headaches, they are more of a fuzziness, I get dizziness. But is it related to that, I don’t know. (Dennis, 69, 2 years 6 months since diagnosis) I seem to have lost some strength in my arms, the strength that I did have […] I don’t seem to have full control of my legs. (Robert, 92, 2 years since diagnosis) My feet—I don’t know what it is; they’re very strange […] they just feel tight; that’s the only—best way I can describe it really. […] my feel… heavy is the word. (Clare, 75, 2 years since diagnosis) I just do feel weak somehow. It’s hard to describe. (Mary, 72, 2 months since diagnosis) I really can’t understand why my bloods are normal and yet […] I still feel not normal. (Iris, 74, 4 years 7 months since diagnosis)