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Roberta

Age at interview: 69
Age at diagnosis: 68
Brief Outline:

Roberta has giant cell arteritis (GCA), a type of systemic vasculitis. She has been offered a biologic medication to help her come off steroids but worries about the possible side effects of medicines.

Background:

Roberta is a retired office and call centre worker. She has three grown-up children and lives with her husband. Ethnic background: White British

More about me...

Since 2016, Roberta had been enjoying retirement. She says she could finally afford to do things like have holidays abroad, make house improvements, and buy a car. As well as looking after her husband - who lives with the long-term effects of an injury - she was sociable and active, making frequent visits to her extended family.

Then, in 2019, Roberta had persistent facial pain for around a month, to the extent that she cut short a holiday in July. Sinusitis was suspected, but there no was improvement with over-the-counter medication or antibiotics. At a second out-of-hours appointment, Roberta mentioned her scalp was so tender that she couldn’t bear to rest her head on her pillow. Suspecting that Roberta had a type of vasculitis called giant cell arteritis (GCA), the doctor sent her over to the accident and emergency (A&E) department.

At A&E, blood tests and a CT scan showed very high inflammation but clear sinuses. As A&E also suspected that Roberta had GCA, she was given high dose steroids (prednisolone), a steroid treatment plan, and appointments for rheumatology and ophthalmology (eyes). Although her pain immediately improved with steroids, over the following months Roberta saw a number of different specialists, as there was some uncertainty about the cause of her symptoms.

It was initially thought that Roberta had trigeminal neuralgia, a condition which causes severe facial pain. Her steroids were reduced quickly and - when a temporal artery biopsy a few months later came back normal – she was started on treatment for trigeminal neuralgia. However, Roberta subsequently felt really ill and was in a lot of pain.

In December 2019, as her pain continued to worsen, Roberta went twice within a week to A&E. On the first occasion, she was upset to be sent home with no investigations or treatment. On the second, blood tests again showed inflammation. As a result, she was re-started on high dose steroids and booked for a second biopsy, which this time confirmed GCA.

Roberta says her rheumatologist is very thorough and has continued to arrange many scans, including a dental x-ray, to get to the bottom of her ongoing pain. However, given the fear and pain she experienced while the diagnosis was in doubt, she finds it difficult to trust doctors as much as she would like. In addition, she historically had bad side effects from medication, which makes her wary of taking more “horrible” drugs. In spite of this, she is considering her consultant’s recommendation to start tocilizumab (a biologic medication) to help her come off the steroids.

Roberta recently attended a support group and appreciates how they understand GCA in a way that family and friends cannot. She remembers speaking to her hairdresser about her tender scalp and would like to raise awareness of this as a symptom of GCA so that people can be diagnosed more quickly.

 

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.”

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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.

 

Roberta is already on one “horrible” drug for vasculitis and doesn’t really want to go on to another.

Roberta is already on one “horrible” drug for vasculitis and doesn’t really want to go on to another.

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So basically, from then I’ve just been kind of up and down with the prednisolone, tapering, you know, it seems to be like every time I get down to ten milligrams or lower the, I start getting a bit headachy and the, the CRP goes up again, so I’ve got, I’ve been a bit up and down with that.

They’ve been trying from the, well the consultant’s been trying from the beginning to get me on to tocilizumab, which I think, I think that’s how you pronounce it, which is a, a drug that helps you get off the steroids quicker. But being me, I’m quite phobic about taking tablets and like I read all the, you know - it’s from previous experience - I read all the leaflets and you know, if I think the side effects are going to be bad, I just don’t take them; I’m a GP’s worst nightmare [smiles].

But the tocilizumab, when I read that it said it’s not recommended if you have diverticular disease because it can inflame it, so I’d mentioned that to her so she said, about methotrexate - which is a cancer drug which is scary in itself - and I didn’t like what that could do, plus you’ve got to have blood tests for your liver and you’d be on it for life and I just said, “I really don’t want to go on these other drugs, I feel as if, you know, why, you’re on a horrible drug and then you’ve got to go on to another horrible drug to get you off this horrible drug.”

But I feel as if I’ve been quite pressurised into taking these drugs and I just don’t want to take them. You know, I became quite upset and quite stressed about it because I thought, you know, “They, they’re the experts and, you know, am I doing the wrong thing by not, by refusing to take it?” So, I think they’ve kind of given up and they’re trying to support me just coming off the prednisolone by the tapering. But I’ve said, I’ve said to the, the consultant on Tuesday that, you know, if when I get down to below the ten milligrams again, and I start having problems that I would maybe consider going on these, one of these other horrible things, but….

 

Roberta gets “peace of mind” from blood tests and is pleased a scan showed her bone density was good.

Roberta gets “peace of mind” from blood tests and is pleased a scan showed her bone density was good.

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So how often do you get these blood tests done?

Well, I’ve been getting them done every fortnight, because I’ve been reducing every fortnight. But when I get to the ten milligrams, I’ve just to reduce one milligram monthly. So, when I get to the ten milligrams I’ll be, I’ll go back to getting them done monthly. But my GPs practice is quite good, you know, they, they don’t mind doing them every fortnight. And it gives me peace of mind because as soon as I get a little ache I think, “Oh, I wonder if my bloods are up.” [Laughs]. Like I say, paranoid again, yeah.

So, I’m hoping that, you know, I’ll get to ten milligrams and hopefully get down to an acceptable dose because they say that anything over seven and a half milligrams is high, plus they’d, the, at the beginning they’d done a, what I worry about the most is the bone deterioration with steroids, and I think that’s one of the biggest things. But they did a bone scan right at the beginning and apparently my bone density was really good for my age.

So, when I spoke to the consultant on Tuesday, she was saying that “Normally we would do another bone scan 12 months after,” she said, “but I think we’ll look, I think we’re safe to leave it,” she said, “for another 12 months,” she said, “because your bones were so good.” In fact, she said that I had the bone density of a 21-year-old when they did it, so, which was good for my age, so.

But I don’t know whether the fact that I was on HRT has, I did mention that to the first consultant because he’d said about having to take this other horrible pill to protect your bones, and I said, “Do I have to take that?” [laughs] And he said, “Well it’s to protect your bones.” And I said, “Well, would the fact that I’ve been on HRT not give me some protection?” He says it would. And the reason I knew about that was because my mum had arthritis and she was - my age, she was in a wheelchair and I used to look after her - and her bones were really bad. I was told by a doctor that, you know, she didn’t have the benefits of being on HRT when she went into the menopause and things. So, I think HRT, if you’ve been on HRT I think maybe helps for the bones. Well, the rheumatologist did say, you know, “It would’ve given you some protection.”

 

Roberta is still upset about the time before her vasculitis diagnosis, when “nobody believed me.” One night she was in so much pain she took a taxi to the hospital, but they “sent me home.”

Roberta is still upset about the time before her vasculitis diagnosis, when “nobody believed me.” One night she was in so much pain she took a taxi to the hospital, but they “sent me home.”

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Yeah, it’s kind of brought it all back. It’s, because, even when I think back to that time, especially when nobody believed me, it still upsets me. So, when I was going to do the interview, I’d went up and got all my letters [holds up to the camera] and reading through them and, and then I’ve written little notes down [shows to camera] so I could condense it. And I did get quite upset again because I’d, you know, it was just because I was, I was so desperate, and I didn’t know who to turn to because it had come back as a negative biopsy.

So, my GP, I couldn’t turn to them, the hospital sent me home, the consultants had decided that it wasn’t, and I just, I’ve never felt so alone and frightened in my life as that night. My husband went to bed, in fact my son was through that weekend as well and he’d came in and went to bed and none of them even knew that I’d been out. I just got a taxi, and I got a taxi home again, came in and they, I don’t think he even knows to this day that I’ve actually done it, that I’ve actually been up to the hospital and that was, yeah, it has brought it back.

You know, because I feel as if, once it was finally diagnosed, I’m trying to move on now, trying to get off, the, the next step, you know, getting off the steroids. But I know that, from what I’ve heard it doesn’t, it’s not really curable but it’s manageable. And from speaking to the, the group on Saturday, you know, that one of them was saying that, you know, it does rear its ugly head every now and then and you sometimes have to go back up on the, on the, the drugs, so that was a bit depressing because I thought, you know, they said it sometimes, you know, lasts for a couple of years and then you’re better. But yeah, I've found out different that you know, it doesn’t really go away, it’s just what they say, you’re in remission, but it can come back.

So, I feel as if I’m always on edge thinking, “Is this, is this it coming back? You know, do I need to increase my steroids or is it something else?” So, I’m always quite on edge. But like yeah, what you were saying about this, this did bring it back, it has upset me and made me a bit angry that that particular period, you know, between the negative and the positive biopsy [laughs] was just horrendous. It was awful.

 

Roberta uses the internet to find out more about vasculitis as “I just worry about everything.”

Roberta uses the internet to find out more about vasculitis as “I just worry about everything.”

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But even the jag [injection], even the, even the COVID jag, you know, I, my mind worked overtime with that because I thought, the way they were explaining about the vaccination works by, your, your immune system starts to fight what they’ve put in, into the jag, and I thought, “Well the steroids reduce your immune system.” And I thought, “Is it going to make me really ill?” you know, like somebody without this condition or without being immune suppressed will be strong enough to, to fight whatever the, the jag does, and I thought, “Am I going to be really ill?” But I was reassured that, you know, I’ve got to take the jag and that other people that were immune suppressed were okay, and they just, all they said was it wouldn’t, maybe wouldn’t be as, quite as effective with someone with an immune suppressed, as it would be with someone that’s not.

So, yeah, that was another little worry. I just worry about everything. And I read about everything, [rolls eyes] I Google everything now, and which maybe is, sometimes it’s a good thing, sometimes it’s a bad thing, that you shouldn’t. So, I’ve just got to put my faith in the, in the, the experts and hope that, well hopefully, hopefully this will help with whatever research they’re doing and training. So.

 

Difficult experiences in the past have made Roberta “frightened” about taking medication, but she worries her vasculitis team might stop supporting her if she doesn’t “do as they tell you to do.”

Difficult experiences in the past have made Roberta “frightened” about taking medication, but she worries her vasculitis team might stop supporting her if she doesn’t “do as they tell you to do.”

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It’s these things that make me frightened, and I just, now I just don’t take the doctor’s word for it, you know, you go down and they say, “Take this tablet.” And that’s why I always read the, the leaflet, you know, and it’s, all it is, is possible side effects, you know, you’re not going to get the, the side effects, but this is how bad I am about taking tablets.

So this, rheumatology nurse had said, you know, that, “Well if you’re not taking the methotrex,” she says, “Take, take it while I’m on the phone” - you know, because I’d explained to her usually when I, when I do pluck up the courage to take the tablet, once I’m on it I’m fine, you know, but it’s the fear of taking them and the fear of the side effect. So, she said, “Well why don’t you take it while I’m on the phone with you just now?” And I said, “Well I can’t because I’ve already taken it back to the chemist.” [laughs] So, she said, “Well I’m really only phoning to support you through your journey on the methotrexate,” so she said, “I probably won’t phone you again.” But I don’t know, she said, “I’ll phone” - I think this was in December - she said, “I’ll phone again in January and, see how you’re getting on, if you’re changed your mind, and…”

So, she did phone in the January and that’s when she said that, you know, that they would just try and support me through the, reducing the prednisolone. But I did when she said that, I thought, “Oh well, you know, because I’m not taking the tablet, I’m not getting any support then.” [Laughs].

Right.

You know, it’s just like, it’s like, they know best? You know, and if you don’t want to - I mean, they can’t force me to take the tablets, but, you know, then you kind of worry that they know best and if you go against them, they’re not going to be very supportive if you, if you don’t do as they tell you to do, but.

But like I say, the, my consultant has been, I mean she’s seen me without appointment, you know, albeit I’ve had to go from, [town], [small town], maybe through to [hospital around 17 miles away] because that’s where she’s based, you know, so my husband’s got to drive me because I won’t drive on motorways or anything, which is quite a trek. But you know, she has, you know, come out of her clinics to, to see me. So, she has been supportive, and she has been, like I say, she’s done all the tests and scans, and yeah.

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