A-Z

Systemic Vasculitis

Symptoms of systemic vasculitis

This page covers:
  • Having symptoms appear in different areas of the body
  • Finding that symptoms are getting worse
  • Wondering what the body will do next
  • Piecing together the symptoms 

Having symptoms appear in different areas of the body

Pain and extreme fatigue were common among the people we spoke to. They described a wide range of symptoms in many different parts of the body. Symptoms of vasculitis could present as infection, pain, swelling or lumps, bleeding, loss of feeling, strength or movement, or a change in appearance, sensation or function of a body part. 
 
 

Before Isabella was diagnosed with vasculitis, she’d had “bouts” of chest infections, stomach problems and painful joints for many years.

Before Isabella was diagnosed with vasculitis, she’d had “bouts” of chest infections, stomach problems and painful joints for many years.

Age at interview: 68
Sex: Female
Age at diagnosis: 66
AAV (EGPA)
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It’s probably about 25 years ago that I started just all of a sudden, I started getting very, very wheezy and I had never had any of these symptoms in the past, you know, before that. I got very, very wheezy. And it kind of passed and then I went to the doctor’s eventually and I was given inhalers. So, I started using inhalers. And if I took a chest infection it was quite bad sometimes, but in the meantime, if I go back further than that, I actually had, off and on, I had stomach problems, you know, from the age of 20, I suppose. And it was put down as a stomach ulcer. But there were stomach ulcers, that kind of problems in the family, so I don’t know whether that’s got any connection or not. But…

I was getting these chest infections, you know, every so often. Not horrendously bad at that point, but anyway, then I got these awful bouts of very, very, very painful joints, and that’s going back about 20, 21 years ago, probably, or slightly more. But anyway, it was I’d have a pain in a joint, it might just be the joint of my thumb, or it could be my knee, my elbow, my wrist, and it would last for a few days, it would get bright red and be extremely painful and then it would just disappear, but it would be somewhere else. It was fleeting all over my body. And I would have it in my jaw here, or, and I was working at this time, and there would be times where I actually had great difficulty changing gears or, you know, I’d be trying to do it with my other hand.

 

Salma’s vasculitis symptoms included infections, pain and other worrying changes throughout her body.

Salma’s vasculitis symptoms included infections, pain and other worrying changes throughout her body.

Age at interview: 51
Sex: Female
Age at diagnosis: 33
AAV (GPA)
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Yes. So back in 2003 yes, excuse me, back in 2003, I, for about four months, from about I’d say July/August, from that time I was feeling always under the weather and also, I had oh, every, this cold that I had, it just keep, kept coming back, it would feel like it was, it was going, obviously I was taking, at the time I was taking Nurofen because that was the only tablet that I could swallow at that time [laughs]. But, yeah, so I just keep getting, kept getting this cold that wouldn’t go away.

After that it progressed and I developed sinusitis, chest infection, urine infection and then another chest infection. So obviously by December, middle of December, I started going to see my GP and she was very good, she said, “Okay, let’s see how you’re doing, come back”, she gave me something to get my energy levels up and she told me I should take different, you know, sort of vitamin C, that sort of thing, so that, you know, I can boost my energy.

But after that the sinusitis started, and then I was having a lot of problems. Apparently my, the whole sinus area was very bunged up, but that, the antibiotic they gave me for that didn’t work, the antibiotic they gave me for the chest infection twice and the urine infection didn’t work, I was still getting very, very ill.

By December I was having awful joint pains, muscle pains. If I sat down, it would take me a very long time to get up because of the pain I was getting in my legs and that. At one time I lost the hearing in my left ear, luckily my aunt came to see us for whatever reason, and she said, “No, put some, warm some oil up with a bit of garlic inside, in the oil and then once it’s cool put it in your ear.” and miracle of miracles it did, my hearing did come back in that left ear, so, yes.

And then probably the last week of December, I started coughing up blood. And I wasn’t really very happy about that, I was quite scared actually. So, and also in the mean-, before the cough, the blood, coughing, I had, I, my ears, sorry, my eyes, one morning I woke up and they were absolutely sort of like racetracks. I had, they were bloodshot completely. So, at which time I got even more worried.

 
Like Salma, Grant, Mo, Pete and Charlie experienced ear, nose and throat symptoms. These could include sinusitis, a runny, crusty, blocked or bleeding nose, nasal polyps, voice problems, tinnitus and hearing loss. In addition, Dawn found that, “My nose appearance was beginning to change, my face was beginning to swell; basically it looked like somebody had punched me in the face.” 
 
People talked about a similar range of problems affecting other areas of their body such as their eyes (e.g. bloodshot, painful, sight loss), head (e.g. headache, tingling scalp), jaw, chest (e.g. wheezing, breathlessness, infection, clots), tummy, joints, skin (e.g. rashes, blisters), hands and feet (e.g. cramps, numbness, loss of power). In addition, similar symptoms could appear in different areas of the body; Nicky and Melissa, for example, were affected by oral and genital ulcers. 
 
 

Roberta’s worst vasculitis symptom was facial pain. She also had a tender scalp and “couldn’t bear to lean my head on the pillow.”

Roberta’s worst vasculitis symptom was facial pain. She also had a tender scalp and “couldn’t bear to lean my head on the pillow.”

Age at interview: 69
Sex: Female
Age at diagnosis: 68
GCA
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I think the main thing would be the scalp tenderness. Because I didn’t really, I didn’t really take any notice of that. And, when I think about it, I think I’d mentioned to my hairdresser at one point not long before this happened, I’d been to the hairdresser and I said, “My scalp’s really sore.” And she said, “Oh, you better, you better make sure you haven’t got shingles.” I said, “What, shingles in the head?” She said, “Oh,” she said, “I’ve heard of shingles in the head,” she says, “I’ve had clients and…” But I never really took any notice of that.

But I think, I think that’s the main thing is the scalp tenderness because obviously they didn’t pick up with it on the facial pain, it was only as soon as I mentioned the scalp tenderness that they, that they’d, so I think that would be the main thing, the scalp tenderness.

And you said these headaches as well.

It wasn’t, well it was just pain, the scalp was tender, and I couldn’t bear to lean my head on the pillow, or. It wasn’t really a headache; it was just tender it was just sore. And, like I say, the facial pain was the worst, it was just, I’d never known pain like that, in my life, it was really, really frightening as well when they, when they, you know, they were saying, like I say, I just think they thought I was just overreacting, you know, but it was really frightening. You just don’t know. And especially when they’d sent you for a, when you’ve got this pain and they send you for a CT scan and it comes back that there’s nothing sinister going on and that your sinuses are okay and you’re thinking, “What’s happening? You know, why have I got this horrible pain?” I would say the scalp tenderness, mhm, definitely.

 

Repeated episodes of mouth peeling and ulcers took their toll on Melissa and her family.

Repeated episodes of mouth peeling and ulcers took their toll on Melissa and her family.

Age at interview: 22
Sex: Female
Age at diagnosis: 18
Behçet’s syndrome
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I had a couple of weeks of being back to normal. I was quite unwell still given that I’d lost a fair bit of weight. I was quite thin as it was at the time and, having been through this, I was sort of emotionally and physically exhausted, particularly at the kind of age I was?

Yeah, so a couple of weeks later it started again. My mouth started peeling. This time I kind of, I knew it was happening, so it was a big rush to try and sort of do all the topical treatments and try to stop it before it, it sort of happened to its, its full extent. But some of the treatments they sort, they took away some of the pain but they didn’t stop it happening, and the second time my mouth got infected, it went very pussy, there was an awful smell, and rather than just being confined to the inside of my mouth it spread out on to my lips, and of course your lips are really, really concentrated nerve endings.

And I was, I was exhausted, so even in the pain I was managing to get some sleep, but then I would sleep and my lips would weep, and the pus would dry and my mouth would stick together with the dried pus? [Sighs] so my mum used to come and periodically through the night, with sort of a lukewarm glass of water with some salt mixed in, and with some cotton buds, and she used to use the cotton buds to sort of prise my mouth back open so I could go back to sleep. And this sort of became a regular routine, [laughs] and I would cry in pain when she was do it, doing it and she would cry because she could see me in pain and sort of it was a huge emotional toll on my whole family. Yeah, it was a really difficult time.

 
Of the people we spoke to, only Jeremy felt he had been effectively “symptomless.” However, even he had what he now knows was a vasculitis rash. 

Finding that symptoms are getting worse

It was common for people to tell us how their symptoms built up. They described getting more symptoms, which became more intense, with the whole process seeming to gather momentum. 
 
 

Gail’s vasculitis symptoms started subtly. She felt scared as they grew in number, intensity and speed.

Gail’s vasculitis symptoms started subtly. She felt scared as they grew in number, intensity and speed.

Age at interview: 52
Sex: Female
Age at diagnosis: 50
AAV (EGPA)
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I had had symptoms of my vasculitis for a long time, but nobody had actually diagnosed anything at that point so, I found that I was becoming more lethargic, I found that, you know, I was getting some aches and pains and just started to really feel unwell, didn’t know what it was but, and that lasted for a number of years and very gradually, and it was very subtle, over the years I just started to get worse and worse .

And the last year, so from about, 2017 over to eighteen, I sort of, maybe even just before that actually, I started to really have significant symptoms. I was having lots of sinus problems, in fact that was a few years before that as well, sorry, sinus problems, asthma, occasional rashes that would disappear.

And then the, at the very end, the last year before 2018, the year of 2017, I was severely ill through that year. My colleagues were worried about me, my family obviously was worried about me, my voice would go, I couldn’t talk, I would have severe sinus problems, I was coughing up a terrible, terrible mucus discharge, really dirty, and blood streaked, I had pus pouring out of my ears, I would wake up in the morning and my whole sides of my head would be covered and the bed.

And then in the December of, 2017 I, this, I had just got to the stage where I was so ill and, I remember I had, well in fact before, just before that, I had gone to the doctor again and I had told her my symptoms, again going from head to toe, I had lots of different things going on, stomach ache you know, even going to the toilet was difficult, and I just said, “This seems to be a multi-system thing that’s happening to me because it’s not just my sinuses, it’s not just my respiratory, there seems to be much more,” and, she was writing things down. And I just remember saying, “And I have horrific cramps in my legs, my lower calves, absolutely horrific cramps,” and she banged her pen down on the table, looked at me and said, “Is there anything right with you?” And I couldn’t believe it. I just, I remember looking at her and I didn’t say a word and at that point I, I felt so scared because I felt as though, “Well I’m on my own, nobody really gets this, nobody’s listening to me,” you know?

And at that point I ended up, I had passed blood as well and I just felt really scared. I remember thinking - and this sounds really dramatic - but I remember thinking to myself, “You know, I’m dying. I know I am; I know I’m dying,” not just saying that, it was scary saying it, “And nobody believes me, nobody gets it.”

And so after Christmas, I woke up on the fifth of January, to go to work, and I had three numb toes on my right foot, and I thought it was odd, but I just thought I’d been lying the wrong way or, you know, there was a bit of pins and needles type thing, but there were just these three numb toes, and I remember saying to my colleague, “You know I’ve got three numb toes,” and she made a joke about, “Oh, no, something else,” because it was a standing joke, I was joking about it as well as it being serious, you know?

And then, the following day I woke up and half my right foot was numb and the toes on my left foot were starting to go numb and I, I thought, “This is, something’s wrong here, this can’t be right,” and I went into work and I said to one of my colleagues, “Do you know, you’re not going to believe this, I’m going to have to go back to the doctor because I’ve got this,” and they’re say, they were all sort of saying, “Numb toes? Numb feet?” and I’m saying, “I have, I’ve got numb feet, it’s really strange.”

And I think it was the following day when I woke up and it had, it had moved, and I knew this thing was moving, because by this point it was this foot I think [points to right foot] and then half way up my left foot and I was walking with a limp and, you know, really, I could, I could still feel it in, in my right foot but not the way it was.

 
Peter said, “All during this period my symptoms were getting worse, a list as long as your arm...It got to the point where I couldn’t actually walk up a normal indoor flight of steps…it was getting pretty much out of hand.” Many noted that symptoms seemed to move around their body. Some people talked about a particular symptom as if it had been a last straw – in Grant’s case when his eyelid drooped, and for Mo, Angharad and Wendy, when they coughed up blood. Like Gail, people often talked about their symptoms getting worse over many years, while for others - including Steve and Jane - it was more sudden and dramatic. 
 
 

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Age at interview: 58
Sex: Female
Age at diagnosis: 57
AAV
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Before you became ill, it was obviously very sudden, the heart-

Yeah, a couple of weeks or so, I remember I couldn’t get my dress off because my shoulder was stiff. And I put frozen peas on my ankles. And the girls at work said I didn’t look well. I had a stomach ache, a stomach upset, I was sick. And they said my eyes looked really weird, and they urged me to go to the doctor. I just remember, I don’t remember anything about that at all so there was nothing I could do about any of the [inaudible]. I took one day off because, because of my pains. And aches. And then went back to work the next day. But I don’t remember anything from [inaudible] until October. It’s all been wiped out.

 

Wondering what the body will do next

People often told us that their symptoms were unpredictable and strange, and not something that they could control. People like Katy and Jane X found symptoms would come and go without any apparent reason. This also frustrated Isabella, as “when I was well, I was really, really well.”
 
 

Jane X found it peculiar when her symptoms would flare up very suddenly then disappear. She now knows this was vasculitis.

Jane X found it peculiar when her symptoms would flare up very suddenly then disappear. She now knows this was vasculitis.

Age at interview: 55
Sex: Female
Age at diagnosis: 51
AAV
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I had my first of what I would call an attack. So, my symptoms would flare up very suddenly from a baseline of being somewhat in pain and uncomfortable, over a matter of hours, always in the evening, to go from like I’m all right, sat here like this, to not being able to move, to my husband and my son having to carry me upstairs because I just couldn’t move and being in absolute agony.

And then it would go off over the next 48 hours or so, and then I’d be back to where I was again. And initially that happened fairly wide-spaced apart, so there was one attack in October, there was one I remember very particularly in the December of that year because it was the day before my birthday [laughs]. And I sat there, I had a friend for tea, and I thought, “I’m not going to be able to get up and let her out the door,” because over the evening, while I’d been sat with her, it had just kicked off again.

And then I thought, “Right, I’m going to go back to rheumatology.” [Laughs]. I had a further attack in the Easter that was very bad, and it was starting to be more frequent. So, I got, went in touch with my GP who was very good. She knew me very well and she always listened. Because she’d known me for years, she knew that I didn’t go in just for nothing and she could see by then that there was something wrong. So, she sent me back.

So, I didn’t get to see them for six months or so? It wasn’t obviously – because they’d seen me twice already, I think, [laughs] and it wasn’t considered an urgent issue. And then I saw a very nice rheumatologist and she took all the details and what I was saying about how I felt. And, by this stage, I’d turned into a bit of a detective, and I was writing down all my symptoms and taking photographs of things, so I would get rashes, whole fingers would just swell up out of nowhere, one swollen finger. Or a bright red eye. And I must admit I was quite glad of those things because it was something I could see.

Because when something comes and goes like that and you’re sort of completely incapacitated and then the next day you’re just in pain but you’re all right, it makes you feel like you’re going a bit mad.

 
In addition, people told us about more general signs from the body that something wasn’t right. Graham, Brenda and Angharad lost weight. Charlie recalled “getting more and more unwell with these awful night sweats.” Wendy talked about getting very cold, and Holly said she still doesn’t know why “it makes me very unwell to be around heat – the hot weather is horrible, and also cold weather as well. I think my body just has a problem regulating heat.” While the people we spoke to felt that the symptoms their bodies were showing were real, they questioned themselves, and also worried that other people might not be convinced. 
 
 

Lynn doesn’t always talk about the more “bizarre” symptoms of her vasculitis.

Lynn doesn’t always talk about the more “bizarre” symptoms of her vasculitis.

Age at interview: 54
Sex: Female
Age at diagnosis: 50
Behçet’s syndrome (atypical)
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I think you used the word ‘bizarre’, a whole load of bizarre symptoms that you wouldn’t, you wouldn’t even mention. What kind of things have you felt unable to mention at your different appointments?

[Sighs] So I think things like – so I have ongoing sweats and whatever, just weird feelings that come over me, that I just, you know feel a bit dizzy or just don’t, or just don’t feel great. I think it, you know, I can, I can be out, I realise that I come across – well, so my perception of myself is that people think I’m quite articulate, but I can be out in a shop and ordering something and I can see [points to head] the next word that I want to see – that I want to say - but I can’t, [gestures speaking] but I can’t get it out. And I’m there like, looking like a fish out of water, you know? Just, and losing the thread of, I mean, you know, my husband will tell you. You know, I start a conversation with him and then I just kind of, my mind just wanders into this kind of sort of trance-like state and I just don’t, and I just don’t finish it, and whatever.

All of these kind of things that make it, that make it quite, and before I, before I developed the blepharospasm, the really acute onset of it, I had this thing which is, since found out is called apraxia of the eyelids, where in the morning I couldn’t get my eyelids open. And I told a couple of people about that, and their reaction to it was just such that I just didn’t mention it anymore, because, like, they were just looking at me as if to say, you know, what’s, and it’s actually it’s all caught up with the, it was a very early warning symptom that, that something wasn’t – that something wasn’t right, you know? And you know, and it does sound really bizarre, “What do you mean you can’t open your eyelids?” You know, I mean, I literally couldn’t get my, couldn’t get my eyelids open in the, in the mornings, I had no control. No control over them.

 

Although Marie was under stress, she felt that her symptoms suggested a more physical cause.

Although Marie was under stress, she felt that her symptoms suggested a more physical cause.

Age at interview: 57
Sex: Female
Age at diagnosis: 53
GCA (with PMR)
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Okay. I was working, I would say round about 2016, 2017, and I kind of noticed that it was a very stressful job. A very, very stressful job. And I had kind of various sort of health things happening, but one of the things that was really, really obvious was very severe, blinding headaches. And I’m not a headachy type of person, never suffered from them, never took, you know, paracetamols and things like that, so it was very unusual for me. But the headaches were such that I could barely turn round [demonstrates turning head to the right] and because it was, sort of stemmed from my shoulders, all the way right up into my forehead. And somewhere about… [smiles] we’re not too sure about the actual symptoms of the headache because I kind of forgot over time, but I’ll explain that later.

So anyway, I was signed off my work because I started to have various tingling and weakened arms? You know? And, and various headaches and things like that, and they signed me off at that point in time with stress.

But then what happened was the headaches became gradually worse until, until the point I was incapacitated and couldn’t actually move for maybe - it seemed like about a minute, but it was probably maybe 30 seconds or something. So it was, for me, quite significant.

But that was also teamed up with my inability to kind of easily get out of my bed, so that gradually got worse. First of all, I just thought it was a sore neck, but then I realised, [does rocking motion] actually I can’t get myself up from the bed. So, I did present myself to the GP, they did some tests, they were continuing to say stress. But eventually my mobility was starting to decrease, and it was quite significant, and things would fall out of my hands. So, it was kind of… this is actually something that’s [laughs] happening to me physically, not just kind of emotionally.

And, but anyway, so the symptoms were gradually getting worse to the point that I actually had to roll off of my bed and crawl to the toilet. And I’m going to include this, it is embarrassing, but sometimes I wouldn’t make it. And that’s how severe the physical symptoms were. And I was just frightened, I thought I was going to end up in a wheelchair. And I, you know, your life spans in front of you - what’s going to happen?

Piecing together the symptoms

Wendy was just one of many people who made notes before their interview to help them remember their “very complicated” sequence of symptoms and events before they were diagnosed with vasculitis. Overall, people had been confused and scared about what was happening to them, and this was made worse by a relentless tiredness and exhaustion. It was only looking back that Karen recognised there were “tell-tale signs,” or that people could see their symptoms were more than could be explained away by normal reactions to work and life events. In recalling what had happened and when, it was common to pin down the appearance of particular symptoms to memorable events such as holidays. 
 
 

The initially “vague” symptoms of vasculitis made Sharon wonder if it was just her age.

The initially “vague” symptoms of vasculitis made Sharon wonder if it was just her age.

Age at interview: 49
Sex: Female
Age at diagnosis: 43
AAV (MPA)
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So that was – I’ll say that was the start of it. But the symptoms were so vague that it was, it’s difficult to pinpoint. You were tired, which was fair enough. The joints were very achy, very sore. But I thought, “Well, maybe, you know, I’ve turned 40, maybe, maybe what happens when you get older.” [Laughs]. You get a bit slower; you get a bit achy, and things weren’t, you know, coming as naturally as before you would think, I used to cycle to work and I noticed that my time was getting slower and slower. You were thinking, “Hmm, that’s not quite,” you know, but you did a day’s work, and you came home. And you were so tired, you just thought, [shakes head] och, dinner and bed, I’ll be better by the weekend.

And because of Early Years and school terms, it’s never too long to the next holiday? So, you thought, “Get to the end of the term, have a break and I’ll go back, and I’ll feel more like myself,” but it didn’t, it just kept on accumulating.

Crustiness around the nose, that was one of the signs which I now know, and that went on for ages, it was just like, you just had this constant nasal drip and redness and soreness. I have an ear irritation, which I can only describe as a hot poker goes in and out your ear. It’s most annoying. And then a sensation down your jaw into your gums and your teeth.

But at that stage, that’s probably all the tiny little bits and pieces that, that I was trying to explain to the GPs.

 
Richard was unusual among the people we spoke to. He already had a condition called polymyalgia rheumatica (PMR), which is linked with a type of vasculitis called giant cell arteritis (GCA). As he knew what GCA symptoms were, he realised there was a pattern to what was happening to him.
 
 

Because Richard already knew about vasculitis through having polymyalgia rheumatica (PMR), his symptoms were like “pieces of the jigsaw.”

Because Richard already knew about vasculitis through having polymyalgia rheumatica (PMR), his symptoms were like “pieces of the jigsaw.”

Age at interview: 64
Sex: Male
Age at diagnosis: 64
GCA (with PMR)
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But after about, oh, a couple of months or something, I started to realise that I was getting GCA specific symptoms.

And that was one benefit that I had because I’d been involved with PMR and going to the support groups, I was well aware of the symptoms of GCA, some of the key things. I believe it’s something like one in four PMR patients will get GCA, so it’s quite important you know about it, and that puts you at an advantage over people who contract GCA as a first illness.

So, I was aware of the symptoms. The aches and pains could’ve been PMR, but initially I had, I was starting to get headaches and tingling scalp, which, you know, just you know sensitive [touches scalp] you know, like, “Oh,” touching your hair and kind of think, oh, an odd sensation.

And so, at that point, I had a telephone appointment because of the lockdown restrictions. Spoke to a doctor who I’ve never met, which is becoming more and more the modern thing, we’ll maybe come on to that I think in later aspects of the interview.

But it was someone I didn’t know and she said, you know, I explained, “I’ve got PMR, I’ve got this, I think it could be GCA.” Coupled with, I was losing weight, had been losing weight for a few months and, as I say, I was saying, “I think this is probably GCA, I’ve got a sore neck.” Which is something I’ve had previously in the PMR journey. But the GP was dismissive, and he said, “Och, no, it, it’s unlikely to be GCA., I think you’ve just got pain in your trapezius,” I think it was called, “If you go online, you’ll be able to get some exercises to do that will help your neck.” [throws hands up] “Thank you, goodbye.”

And that was very disappointing, because I’m thinking, “I know this is GCA or it’s definitely symptoms, this is serious.” I accept the GP’s saying it’s unlikely that it’s GCA, but that’s unlikely for the general population. For somebody who’s got PMR, as I say, they reckon it’s one in four, one in five will go on to develop it, I think you have to take a different viewpoint.

So that was very disappointing, that was a Thursday. The symptoms persisted over the weekend, and then on the Tuesday of the following week, I was aware I was getting a bit of discomfort in my jaw when, when I was eating and, more worrying, reading the newspaper, suddenly my sight was all broken up and that really scared me, [laughs] I mean, “Whoa, yeah.” I’m thinking, “Right, this is, you know, that’s two more pieces of the jigsaw of GCA symptoms.”

 
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