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Isabel

Age at interview: 76
Age at diagnosis: 74
Brief Outline:

Isabel has giant cell arteritis (GCA), a type of systemic vasculitis. She is delighted with the care she has received.

Background:

Isabel worked in a bank from the time she left school until she retired. Her husband died recently, and she has two grown-up children. Ethnic background: White Scottish.

More about me...

In Autumn 2018, Isabel wondered what had happened. Out of the blue, she was sore all over and her husband had to help her out of bed. She got a same-day GP appointment where a young doctor suspected a condition called polymyalgia rheumatica. The senior GP agreed and prescribed steroids, which quickly got rid of the pain. He also arranged to see Isabel once a week for blood tests and monitoring.

By the fifth week, Isabel had headaches that were keeping her up all night. She says these were so painful she watched the clock to see when she could take the next paracetamol tablet. Because she had polymyalgia rheumatica and headaches, Isabel’s GP suspected that she had a type of vasculitis called giant cell arteritis (GCA). He made an urgent hospital referral; the appointment came so quickly that at first Isabel thought she must have been given a cancellation.

The consultant rheumatologist did an ultrasound scan to check for inflammation in Isabel’s arteries and confirm the diagnosis. Isabel says that her consultant really wanted her to understand GCA. She explained everything clearly, gave Isabel leaflets to read about the medication, and encouraged her to join a support group. Isabel feels this care was important because, once GCA is under control, it would be easy to think you don’t actually need the pills.

The consultant started Isabel on high dose steroids (prednisolone) and gave her a plan to reduce these over time. She prescribed an additional medication called methotrexate to help reduce the dose of steroids. It took a few months for the headaches to go, but Isabel says that - apart from an occasional “feeling” in her temples and less energy than she would like – she has been well since.

Isabel says she is delighted with the NHS and everything she has been given, as nothing has been left undone. At an early stage she was warned to go straight to her GP (or out of hours to accident and emergency) if she had changes in her vision, headache or jaw pain. Her GP, optician and consultant all see her quickly when necessary; for example, when she experienced visual “distortion,” her consultant did further ultrasound scans. Isabel finds this reassuring as her own mother suddenly went blind in one eye.

Isabel can phone the rheumatology nurses directly when needed. She once phoned a charity support line and found it helpful to talk to someone who understood how she was feeling. Her last hospital appointment in December 2020 was in a nurse-led clinic and she is due to see the consultant in July 2021. Isabel is planning to ask if it is likely she will come off the steroids and methotrexate and if she will continue to be monitored.

Isabel says she doesn’t dwell on her illness and could nearly forget about it if she didn’t have to take pills every day. She is looking forward to going on a cruise with her cousin when the COVID-19 pandemic is over.

 

Isabel’s GP saw signs of giant cell arteritis (a type of vasculitis) and sent her quickly to rheumatology.

Isabel’s GP saw signs of giant cell arteritis (a type of vasculitis) and sent her quickly to rheumatology.

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[Laughs] I wondered what on earth had happened to me. Just all of a sudden, my husband had to help me to get out of bed. It was like polymyalgia. And I was really, was very sore, [laughs] so I managed to get a quick appointment at the surgery, and I got a young doctor, I think just starting. And she thought it was that and she said, “I’m going to get the senior doctor to have a look at you.” So, she passed me on to the senior doctor in the practice. And he agreed that steroids, which she had suggested, was the right thing to do.

So, I attended him every week, I had to get blood tests taken and he was watching the inflammation on the computer. And the steroids, oh quickly got rid of the pain, it was very good. But I was left with headaches. Every night, I was sitting up with headaches.

So after, I think it was four, five weeks, he said, “I’m going to get the local hospital, I’m going to refer you down there.” So, I got a quick appointment, that quick I said to him, “I think I’ve got a cancellation [laughs], I’m going in Monday. Nine o’clock.” He says, “No, I asked for the urgent appointment for you.”

So, I saw the consultant and she immediately gave me a scan, so that was done right away, and I had a consultation with her.

 

Isabel had ultrasound and a temporal artery biopsy to confirm vasculitis. She felt pressure but “no pain.”

Isabel had ultrasound and a temporal artery biopsy to confirm vasculitis. She felt pressure but “no pain.”

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Yes, it’s like the baby scan, that’s a, the gel one? And she does from my shoulders, over my head. That, I’ve had three of those.

So, what, are you lying down or?

I’m lying down and she, you know, she puts the gel on me and goes over it and watches her computer. I just see bright colours and everything but she’s watching it. Oh, and the last time I was down, the nurse said to me that that consultant no longer needs to do biopsies, she’s very skilful that she can do without. I don’t know how she does it but, whether it’s all with scans, I don’t, I don’t know.

So, this is like ultrasound scans?

Yes, yes.

Yeah, right, okay. And do you, you said you did have a biopsy?

Yes, I did.

What do you remember of that?

It was two nurses that did it, who were trained to do it. And there again, it was just a, an outpatients’ clinic, and it must have been at least half an hour. It was done down the side of my hairline here, [points to right temple] but afterwards there was nothing, after it healed, there was nothing to see. And I could hear them talking, I could feel them pressing - no pain - but I could feel them pressing as they were trying to get the part they were wanting. It seemed to be very small, what they were trying to get. That, and them discussing it, saying, “That wiggly bit, try and get that wiggly bit,” [laughs] you know? And that’s all I could, you know, I could hear. That, there again, the gel and everything was on, that, you’ve to wipe it all off and get your hair combed [laughs]. But no, it was a nurse, two nurses. One was sort of instructing the other one how to do it. So. That must, whether that confirmed that’s what it was, giant cell arteritis, I don’t, I think so.

 

Steroids and methotrexate control Isabel’s vasculitis. She’s “pleased with the way everything’s going.”

Steroids and methotrexate control Isabel’s vasculitis. She’s “pleased with the way everything’s going.”

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Did the steroids make a difference to the headaches?

No, they didn’t. It took, took a wee while before - I think they eventually did, but it took me quite a few months. I can’t remember now whether it was when I got on to the methotrexate or not. I can’t remember, I’m sorry about that. And the headaches – I’m not bothered with the headaches now. Haven’t been for quite some time. The consultant did tell me that it wouldn’t be a quick cure. It would be, she didn’t say how long, but as I say, that was the end of 2018, so it has taken a little time. But, other than fatigue, I don’t find it restricting me at all.

And what about the polymyalgia side of it? Do you still have symptoms of that?

No, no. I don’t. I haven’t had that for quite a long time. That, no, the steroids seemed to take care of that and I’m still clear of that. I occasionally - but very seldom - I’ll maybe get a slight feeling here [touches both temples] and I do take note of it. But it hasn’t happened for fully a month, and it never lasts any time. Very short. But I don’t really have a lot of trouble at all, I’m really very, very pleased with the way everything’s going.

 

Isabel has giant cell arteritis (GCA), a type of vasculitis. She was told what a flare would be like and what she should do about it.

Isabel has giant cell arteritis (GCA), a type of vasculitis. She was told what a flare would be like and what she should do about it.

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What if something happened? What if, I don’t know, what if you got a terrible headache again? What would you do at that point?

If it was a terrible headache, I would monitor it for a short time to see what it was, and I wouldn’t wait too long. Because, at the beginning, before I got to the hospital, the GP said that if I got anything like that or disturbance in my eye or anything like that, if the surgery was closed, I’d to go to A&E. That bit – I forgot it, that bit, that was way at the beginning. At the beginning, they told me to do that.

So, you were quite clear, even at the beginning, that this had the potential to be a medical emergency.

Yes. I was told headaches, eyesight, jaw, sort of if the, I’ve not really had much bother with that, but I was told if anything like that happened, I’d either to get the doctor or to go to A&E. I’d forgotten all about that, sorry.

 

Isabel is grateful her vasculitis was treated with steroids but says they had her “flying through sudoku.”

Isabel is grateful her vasculitis was treated with steroids but says they had her “flying through sudoku.”

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Yes, it came out of the blue. I just sort of, I think, wakened up one morning and could hardly get out of bed. That my husband came round and was pulling me sort of up out of bed, and I did manage to go down to the doctor’s, he took me down and I got a quick appointment and I managed to go down there, feeling really quite, wondering what on earth had happened to me [laughs]. But as I say, it was straight on to steroids, which I’m very grateful for.

And, but I really did quite well, I can’t say I was feeling very, very ill or anything like that. I had the usual things when you go on to steroids, falling out with my husband, falling out with my son [laughs]. They couldn’t keep me going in sudoku, I was flying through sudoku, but that quickly, that quickly went down, and I got back to my old nature again [laughs].

 

If Isabel didn’t have to take pills every morning for vasculitis, she “would forget I’ve got it.”

If Isabel didn’t have to take pills every morning for vasculitis, she “would forget I’ve got it.”

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Oh, I haven’t had any difficulty in coming to terms with it. No, none at all. That, I don’t dwell on it, because I know everything’s under control. That is the main thing. I know it could be a very serious condition if it hadn’t been managed, but I’m not in the least bothered, it doesn’t worry me in the slightest. That, no, I can’t say I worry about it at all.

I could nearly forget I’ve got it if I didn’t take the pills every morning, I would forget I’ve got it. I couldn’t have any better comment than that, on how it has been managed. Or maybe it’s just, maybe it’s just, I was going to say nature and probably the upbringing, where you just coped with everything. You don’t think, “Oh, that could have happened to me,” or that, I just think, “No, it didn’t happen to me, I’m the fortunate one.” My mother wasn’t so fortunate, she lost the sight in her, her eye with it, so things have moved on so much more since then. She didn’t know, they just said it was a mini stroke with her. So no, it hasn’t impacted in my life at all, other than I wish I had enough energy to play 18 holes at golf without a buggy [laughs].

 

When Isabel’s eyesight became distorted, the optician saw her quickly and “read up” on her vasculitis.

When Isabel’s eyesight became distorted, the optician saw her quickly and “read up” on her vasculitis.

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I did have a bit of distortion I’d forgotten about, and I phoned down to the hospital and spoke to the consultant. And she says, “I want to see you –” it was I think a Friday, this was – “Monday morning at nine o’clock.” And she says, “If you could get the optician to have a quick look at your eyes just for - if there was anything else wrong, to clear anything else out, not an eye test.” There you are, I’d forgotten about that. Which I did, my optician. I think twice, I must have had a slight distortion. Now it’s coming back. But then it’s, what, two and a half years since I started with it. And he always gave me a quick appointment too, before I got down too, that was when she always gave me another scan. That’s, sorry, it’s coming back to me. I got the initial scan and the twice where I felt a bit of distortion in my eye, I then got other scans. But that’s quite a while ago.

And you also got - continuing the theme of speedy appointments - your optician, another member of your healthcare team who works in a completely different setting, was also somebody that gave you quick appointments?

Yes. Actually, when I went, the first time it was to get an eye test and I said to him that I had giant cell arteritis, he got his book out and read up on it. He says, [laughs] “I don’t think I’ve had anybody else in that has said that.” So that was when I had a bit of eye distortion, but I haven’t had that for a long, long time.

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