Graham
Graham has a type of systemic vasculitis called giant cell arteritis (GCA). Treatment came too late to avoid permanent sight loss in his right eye, which he describes as life changing.
Graham is a retired chemical engineer. He lives with his wife and they have two grown-up children. Ethnic background: White British.
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In 2012, Graham had pains all over his body, so went to his GP. As blood tests showed high inflammation, the GP referred him to rheumatology. Given the 14-week wait for a routine appointment, Graham meantime saw a rheumatologist privately, who diagnosed polyarthritis and prescribed sulfasalazine. However, Graham continued to feel unwell; he developed bad headaches and night sweats, and lost weight.
On a Friday two weeks before his NHS rheumatology appointment, Graham describes having a severe headache and seeing a large doughnut shape replacing the vision in his right eye. At 5.30pm he consulted a locum GP. She suspected that he had giant cell arteritis (GCA), a type of vasculitis, so phoned the eye clinic. They saw Graham on the Saturday morning and prescribed oral steroids.
The following morning, Graham’s vision was worse, so he went to the hospital eye ward. He was immediately admitted and given intravenous methylprednisolone but, by midday, his right eye vision was “a blank.” It was a shock when the doctor said that this sight loss would be permanent, and that Graham’s left eye was also at risk.
At his NHS rheumatology appointment, Graham recalls that the rheumatologist was very upset about the sight loss and that the original referral had not been made as an emergency. Although Graham is clear that he attaches “no blame,” he feels there were several missed opportunities to fast-track his care, be more decisive, and make him more aware of the urgency of treatment.
For a number of years, Graham saw a series of rheumatologists. He has felt more secure since the arrival of a permanent rheumatologist, whom he describes as “proactive” - reading all his notes and carrying out investigations including a positron emission tomography (PET) CT scan and ultrasound scans to identify inflammation in the blood vessels. Graham expects to be on lifelong immunosuppression and thinks that, where people live in fear of losing their sight through vasculitis, it might be beneficial to have an ophthalmologist as part of the team.
Graham emphasises that the loss of vision in his right eye has been life changing, for him and for his wife. He regrets that “panic” at the thought of also losing vision in his left eye led them to move from a house in a village to a town centre flat. He gave up golf, bowling and hill walking, and became very cautious when driving. Fatigue, “brain fog,” and sleep problems as a consequence of the vasculitis and steroids were an additional factor in deciding not to travel abroad, which they had both enjoyed.
However, Graham says he counts his blessings. His wife makes sure he keeps on the move, and they care for each other. The couple now live in a bungalow with a garden in a city retirement complex, where they are happy and have access to paid care services if they need them. Although he lives with the life changing effects of GCA, he feels lucky they have both reached an age that many others don’t.
Neither Graham nor his doctors realised that vasculitis was threatening his eyesight.
Neither Graham nor his doctors realised that vasculitis was threatening his eyesight.
So, he said, “I can refer you to NHS rheumatologist but there’s a 14-week wait,” so he said, “What would you like to do?” Didn’t press me. But he didn’t offer to get me, at any time, an emergency appointment, which he could have done but he didn’t. Anyway, that was fairly early on.
So anyway, I said, “Well, I’d like to go and see a rheumatologist privately in the interim, but I would still like to see the NHS rheumatologist in the 14-weeks thing.” So, I went to see a rheumatologist, of course, going privately, within days I’d got the appointment, went to see him. He did a, quite a thorough test, and he concluded that the condition was called polyarthritis, which I’d not heard of before. And he said, “That’s because it’s affecting not only the top part of your body, but also your legs and feet.”
So, he then put me on to medication called sulfasalazine. Sulfasalazine. And I started off taking this and after a while, the aching did seem, it seemed to ease a bit, the aching in the bones. However, I got a lot of side-effects from it: headache, skin irritation – terrible skin irritation, dry eye, stomach pains. So, I called the GP and he said, “Well, look, just halve, halve the dose. Because, you know, we are, we will, you will see the NHS rheumatology in due course.”
I did that but still the headaches were bad, really bad. So, I assumed it was all to do with side-effects from the sulfasalazine, so then I called the private rheumatologist again and he said, “I’m sorry, I can’t see you again. You’re only weeks away now from seeing the NHS rheumatologist. Just drop off the sulfasalazine and wait.” So, I did this - and I was only a few weeks away then, you see.
Anyway, this took me up to within two weeks of seeing the NHS rheumatologist, and then on the 8th of April 2012, I lost, I started to lose the vision in my right eye. And this can only be described as like a large doughnut in the middle of the eye.
I’d taken the grandchildren to see a film and had headaches. And we were driving home, and I said to my wife, “I’ve got to see a GP.” What I should have done in retrospect was to go straight round to A&E, but I didn’t.
Graham regrets trying to reduce his steroids so much, as his vasculitis suddenly relapsed.
Graham regrets trying to reduce his steroids so much, as his vasculitis suddenly relapsed.
Since coming off the IV and the 60 milligram prednisolone tablets, I’ve tapered down, and I got down to about seven or eight. And then I thought – and then I chatted with this patient in [large city] and asked her how she was getting on, a few, a couple of years later. And she said, “Oh, I’ve got down to five.” I said, “Right, if she can get down to five, I can get down to five.”
I did take it very slowly, but I went down, slowly, half-milligrams. I went down to five. Up until then I’d had no relapses whatsoever, and suddenly within a couple of days I had a relapse. Severe headaches, recognisable, these headaches. Temple headaches.
And so, the doctor - I’d changed practice by then, practice in [town] - she got me straight, she got straight on to the rheumatology and they put me straight back on to 60 milligrams of oral prednisolone. And then I came down, tapering down again, and they said, “Whatever you do, don’t go below, below seven.” And I’d been told this by my rheumatologist, so it was my fault. Trying to be clever. So, I’ve been on seven now for some time and I’ve never had a relapse. Seven is a good place to be, actually.
As vasculitis has affected Graham’s vision, he has to drive slowly and carefully.
As vasculitis has affected Graham’s vision, he has to drive slowly and carefully.
But it’s the effects it has on your lifestyle, the field of vision is reduced, I have parallax. I was incredibly lucky – well, I say lucky because I know I’ve been lucky - because I passed the independent test for driving. And I, I know of other people – in a club I’m in - the same age who have been told you can no longer drive. Anyway, they were a long time making the assessment, it was a board of doctors, and they said, “Yes, you can drive. You must notify us if there’s any impairment to your remaining vision and you must have a test every year.”
And the optician does the test now and the last one was 20-20 vision in my remaining, my remaining vision. I do have to be careful because the field of, of vision is reduced, I have to move my head around, use mirrors, don’t drive as fast, and live with it, you know?
Some people often say, “Why do you drive so slowly?” If I was out on hill walks and my turn to drive, they’d say, “Why didn’t you overtake that car? Why did you stay behind that lorry?” I’d say simply, “I’ve only got single vision and it’s, I don’t, I’m not so confident.” Age aside, aside, you know?
Graham “panicked” about losing his remaining eyesight from vasculitis, so told his wife they had to move into town. They then spent 7 years in a flat that “wasn’t for us.”
Graham “panicked” about losing his remaining eyesight from vasculitis, so told his wife they had to move into town. They then spent 7 years in a flat that “wasn’t for us.”
But the worst thing that happened to us was we thought - goes back to just this loss of vision, you know, single loss of vision - was that I was put on the 60 milligrams of prednisolone, and I was told when I left the hospital, “It’s always possible you could lose vision in your remaining eye.” So, I panicked. I went home and said to [name], my wife, “We’ve got to leave.” We were, we were in a lovely bungalow in [village], but it wasn’t, didn’t have shops readily close to us. And I said, “If I lose vision in both eyes, I don’t want to be here.”
So, we moved to a flat in [town] and we stayed there for seven years, actually, but we didn’t like flat living, it’s not ideal if you, if it’s avoidable. But it was close to the shops. That was the thing. So, if I’d lost my vision completely, I could have done without, I could have managed without the car and there was a Co-op nearby. But eventually we decided flat living wasn’t for us, and anyway, [town] is quite a way from the hospital. So. And my wife missed the garden. So, we’ve now moved into this bungalow, which is only a two-bedroom bungalow, but it’s got a nice garden back and front, we’ve got our own front door, it’s just what we needed and it’s great. And it’s only ten minutes from the hospital, it’s only ten minutes into [city]. Should I have said that? [Laughs]. And very soon we’ll have a bus stopping virtually outside, number 15. All the way down to the beach if we need it, you see? So, I count my blessings [laughs] and you’ve got to do that.
Vasculitis left Graham with single vision. An eye clinic assistant encouraged him to persevere with golf.
Vasculitis left Graham with single vision. An eye clinic assistant encouraged him to persevere with golf.
Do you feel – you’ve described a lot of things, how your left eye changed and the things that you had to do to adapt. Did you have any support with that at all, or any information to help you do that?
Yes, I had one chap from the clinic at our local hospital - which is yours as well, presumably - who had this, he was retired and he had this job, nice job he had, of checking up with patients and checking, “Well, are you still keeping active? What are you doing? Have you had to give up anything?” And I said - he phoned me - and I said, “Yes, I’ve had to give up my golf because of the parallax and the depth of vision. I can’t just swing the club properly and I’m not sure whether it’s doing my eye any good.” So, he said, “Leave it with me, I’ll check up with the specialist.”
So he went, he had a word with one of the consultants and the consultant said, “Keep up with the golf, keep persevering, we have encountered people with single vision who still actually do play golf. Your eye does adjust.” But I did try, but at the time I was doing other things, hillwalking and bowling, so I don’t, and so I thought, “Somewhere I’ve got to draw the line,” so I gave up the golf. But I’ve heard since, one or two people say, “Ah yes, so and so plays golf, he’s single vision,” but it can’t be easy. It’s just this parallax, it gets to you after a while. And maybe if you persevere, it can improve, but I didn’t really follow it up any further. But this, this chap did help, he did at least follow it through. In fact, I got more help from him than anybody else in the eye clinic.