Richard

Age at interview: 64

Age at diagnosis: 64

Brief Outline:

Richard has giant cell arteritis (GCA), a type of systemic vasculitis. He already had a relatively common condition, polymyalgia rheumatica (PMR), and was aware they can be linked. This meant he recognised symptoms of GCA and sought medical help quickly.

Background:

Richard is a retired chartered accountant. He and his wife have two grown-up children. Ethnic background: White British.

More about me...

In addition to his day job, Richard played hockey at an elite level. This was interrupted by health issues in 2011, including an irregular heartbeat and a stroke in his optic nerve which left him with incomplete vision. In 2012, Richard found himself stiffening up and struggling to walk or get out of a chair. Following investigations over the course of a month, his GP diagnosed polymyalgia rheumatica (PMR).

PMR is usually managed in the community by GPs. However, Richard understands that he was referred to rheumatology because they felt it was unusual for a younger man to have PMR. He remembers the immediate effect of the high dose steroids: “you can dance because the pains have gone away.” Richard gradually reduced the steroid dose and the rheumatologist was happy to discharge him back to GP care.

Over a few months, as he reduced his steroids further, Richard noticed aches and pains appearing. Through attending a support group, he knew that PMR was sometimes linked to a much less common condition, a type of vasculitis called giant cell arteritis (GCA). A “penny dropped” for him that the aches and pains - including headaches, a tingling and sensitive scalp, and a sore neck – along with recent weight loss might be signs of GCA.

In July 2020, Richard discussed his concerns in a telephone appointment with a GP. Given his medical history, he was disappointed that the GP felt GCA was unlikely and instead referred him to physiotherapy. Over the next few days, Richard developed discomfort in his jaw when eating and noticed unusual problems with his eyesight when reading the newspaper. By this point he felt very scared as he was aware untreated GCA could lead to sight loss. 

Richard phoned the rheumatology department where he had been treated for PMR. They advised him to get his bloods checked by the GP but unfortunately the first appointment was nine days away. He decided his best option was to go to an A&E (accident and emergency) department at a hospital where he knew through the support group that a fast-track GCA system was in place. Richard describes his care there as “absolutely brilliant.”

Blood tests showed high levels of inflammation and, as his symptoms suggested GCA, Richard was immediately started on a very high dose of steroids. He was given an appointment with the ophthalmologist (eye specialist) the following day. Appointments for ultrasound and a biopsy of his temporal artery followed but were slightly delayed due to the COVID-19 pandemic.

Richard has a schedule for steroid reduction but uses his previous experience to go more slowly when necessary. He is slightly frustrated that the pandemic has had an impact on follow-up appointments as he has questions he would like to ask. Meantime, Richard values continued involvement with the support group as it reminds him of his sporting days when you go out “and play for each other.”

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

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.”

Richard wasn’t prepared to wait nine days for blood tests when vasculitis could affect his eyesight.

So, I thought, [sighs] “I’m not going to waste time going to the GP.” So, I phoned, tried to the phone the rheumatologist, the consultant. Spoke to her secretary, explained the symptoms, backing it up, you know, “I’m a PMR patient, I know the symptoms, I’ve got this, this, this, this, this, you know, I’m worried.” And so, the secretary went and spoke to the rheumatologist. I got a phone call back from the secretary in the afternoon to say, “Right, the doctor says, if you arrange to get bloods at your surgery and then we’ll be able to assess whether you’ve got it or not.”

[sighs] “Oh, okay,” I was a bit disappointed, and I phoned my surgery and the first appointment I could get for bloods was nine days away. And I thought, “No, this isn’t on.”

With hindsight, I’m a wee bit disappointed I waited overnight thinking about it, “What should I do?”, and it was the next day that I just decided, “No, this is ridiculous.” I’d made the appointment for the bloods, but I kind of thought, “No, this is ridiculous, if the GP can’t help, if the consultant can’t help, I’ll go to accident and emergency.”

Richard knew about reducing steroids as he had polymyalgia rheumatica (PMR) before vasculitis. This gives him “confidence” to use the schedule as a suggestion rather than a rule.

I have followed that, up to a point, it just, just over a month ago now, I was struggling to make the drop from ten milligrams to nine, so I’ve, I’ve returned to ten and, it’s one of the areas where my previous PMR experience I think makes things easier for me in that I have the, you might call it confidence to, deviate where appropriate from the prescribed path. It’s not being cavalier, it’s not deciding I know best and so on, but it’s just realising that the schedule that’s been mapped out is a suggestion. But I think as I said earlier, the disease will go at its own sweet pace and if that’s not tying in with the reduction in steroids you’ve got to be able to say, “No, just I can’t go down, let’s just stop here a bit.”

It’s a discretion that has to be used carefully, though, because you do read in the online sites about people who have quite a bit of trouble, if they play around with the doses too much you can end up with what they call yo-yoing and you, if you go up too quickly and then try and come down, the, the whole pattern of your inflammation I think can get disrupted, it never truly settles and you can end up with I think just more problems in the long term. I don’t know the details of why it happens but it’s very much the tone that I pick up from what I’m reading.

So, I think I, trying to be careful about it, don’t be too dramatic, give, give the aches and pains a chance to go away when they do appear because, when you do a drop down, say from ten to nine, the body may react just to the reduction in steroid, but they reckon that any impact of steroid withdrawal will go away after two, three, four days. So, I gave it two weeks before I said, “No, this is, this is lasting so let’s just go back up.”

Richard feels steroids have affected his concentration and made him more irritable.

The one area where I am aware of steroid affecting me is kind of, mental, is in my brain. A couple of aspects to it, one is affecting my ability to concentrate, and I think the steroid comes into that, I don’t think it’s all, just I’m getting older, I haven’t worked for eight plus years or whatever, no. Because that could be a factor you know, just you’re not used to working.

But actually, no, during the time I have had, you know, I’ve been doing things for charities and what have you, that have required me to concentrate and work, but I do find it hard to concentrate for any length of time now. So that I, I could do a, a, a shortish burst of work concentrating, you know, proofreading a document or making comments on it, that kind of thing and, and then I have to finish and just go away. And in fact, sometimes I can’t even start the process, there, there are times I’ve come through, to sit here at the computer and just thought, “Och, I can’t be bothered, no, I’m just, I can’t switch on,” and away I go.

So, the concentration bit, I think is from the steroid. The other area I think is definitely the steroid is, and it’s kind of linked but slightly different is, irritability. I find, if, [sighs] well I actually told colleagues, I’ve been involved all my life in the [a youth organisation] and involved at, you know, regional level sitting on committees, I had to say to the folk, “Look, pull me up if I’m grumpy, irritable.” I found I would make snap decisions, just something, you know, some situation I’d say, “Och, dum-dum-dum.” You know, that’s what we should do, instead of, well it’s not really my nature, think more carefully and what have you. And I would be annoyed if there was some way I thought, “Oh, that’s stupid,” and so on.

So, I had to say to my colleagues, “Look, pull me up if, don’t just sit and take it. If you think I’m being unreasonable, say. Because I know I’m doing it and need to be told about it.” And I found that very, I found that annoying because it’s not me and, but it was affecting my involvement and what I could do, and I just, I have to try and, even now just work on it, just make sure, don’t immediately react to anything. Let’s just be calm, count to ten.

Although Richard is “no fan of touchy-feely stuff,” he enjoys being part of a vasculitis support group.

I don’t know what made me go and look online. I’m not someone who Googles endlessly, you know, and spends time. But I came across the website for the, for me it’s the Scottish charity, and it talked about the support groups, and I thought, “Oh, right, oh, I’ll go along out of interest.” And I went along and it’s, it was only, oh, five people, six people, sitting round a table.

And I enjoy it. The people there are a mixture of generally kind of relatively newly diagnosed people and longer-term patients and indeed survivors. So, there are three categories, and it’s a useful forum. I enjoyed just hearing folk chatting, I picked up some knowledge, you get the comfort of, right, there are other people going through this. Over the years I’ve been particularly struck with some of the new patients coming in who love the fact that they’re meeting folk who understand what they’re saying.

Quite a few occasions I’ve heard people saying, “Och, you know, my family are good, you know, they do, they listen to what I say and so on and so forth, but they don’t really understand.” And some of them get quite moved by, I don’t know, I think it’s just being able to relax, or have a release of information, you know, “I, oh, I can sound off about this. you know, if I do this at home the folk will think I’m moaning, they’re, you know, they’re good but they think I’m moaning whereas you guys understand, it’s just great to get it off my chest.” And the patients can be quite weepy about it, but it, but because everyone understands actually it’s, you know, it’s embarrassment free. That’s quite good.

I’m no fan of touchy-feely stuff and so on, but quite understand it and, and it’s nice that they feel that, that they can, och, there’s no embarrassment in getting that off their chest.

Also, it provides a chance, some people come in and rant a bit, they’re angry with their treatment or whatever and sometimes we can give suggestions about what to try or, you know, tell them, “Well look, try a different GP within the practice if you’re getting nowhere with that one.” And it might be giving them ideas they didn’t have before, or it might be that someone’s saying that “Yeah, I’ve been thinking about that, you’re right, I’ll do it,” and that brings some success as well. They sometimes come back to the next meeting, “Oh, it’s great, I did that and now I’m getting this, I’m feeling better about things.” So that’s useful.

Richard hasn’t been offered services to help him live with vasculitis and doesn’t feel the need.

So, it kind of affects your outlook there, what you can do just now, and so in the future you hope that you will get, it’s the stamina is the main thing actually that’s, I feel I’m missing.

And I’m assuming, I might be wrong, but I’m assuming there’s not at any point been anything through the NHS that has been like a programme to think about things like stamina, there’s not, you’ve not heard of anything or been referred to anything like that?

No, I haven’t. No, the, the only involvement with other NHS services has been physiotherapy, if, I had a kind of frozen shoulder at one point and just before the first COVID lockdown, I was getting some help with something to do with my legs. I can’t remember which specific thing, because actually I was the very last appointment the physio was seeing before he’d been banned, the clinic was closed down and he was being reassigned to intensive care or something.

But no, I haven’t had anything on the kind of, health side, mental health or what, I don’t know, occupational type things. I haven’t felt any great need for it. Yeah, so actually, yeah, I don’t have a problem that I haven’t.

So, if, even if it had been offered it’s not necessarily something that you, that you’ve felt is a gap?

No, no, I don’t think of it as a gap.

Richard has polymyalgia rheumatica (PMR) as well as a type of vasculitis called giant cell arteritis (GCA). He thinks that, while internet forums are important, they can also “just mislead a patient.”

So no, no, I think we’ve covered, the main things and kind of the main things I would want to pass on to patients, you know, on looking at a website. I think the support groups are important.

I think people have to be wary of things like the [internet forum] website where you’ve got a mixture of people talking and some are knowledgeable, some aren’t. You see any number of posts, kind of saying, “I think my PMR was caused by…” and there was one at the weekend, “Oh, I think it was caused by my statins you know, I started them and then got PMR.” Now it might be right, but equally, I’ve been on statins for 30 years and, you know, it didn’t cause it, so, but, but you read things, and it could just mislead a patient. But I do also understand where these people are coming from, you’re desperate to find a reason for, “Why me?” and as I say, I, there is a possible tenuous link for where I’ve got it from, but it’s tenuous and it could be total rubbish, it could be stress, it could be anything, luck of the draw.