A-Z

Systemic Vasculitis

Being given a systemic vasculitis diagnosis

This page covers:
  • How people were told they had systemic vasculitis
  • How people reacted to getting a systemic vasculitis diagnosis
  • How a systemic vasculitis diagnosis brought a focus and urgency to healthcare

How people were told they had systemic vasculitis 

People had a variety of recollections of being told they had vasculitis. Angharad remembers the doctor who told her as “really lovely” and “relatively calm,” while Dawn is still hurt by what she feels was a lack of “compassion.” Dean, who has a very rare type of vasculitis (Hughes-Stovin syndrome), was told “we think it’s this,” while Marie recalls a young locum doctor saying, “I know exactly what you’ve got.” 
 
 

Wendy felt the doctor who told her she had vasculitis was “lovely” and the first to understand “the whole picture.”

Wendy felt the doctor who told her she had vasculitis was “lovely” and the first to understand “the whole picture.”

Age at interview: 56
Sex: Female
Age at diagnosis: 53
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

And finally, my rheumatology appointment came through, so I had to wait two-and-a-half months for that. And the rheumatologist said that she, after the initial assessment, she was like, “Oh you’ve got some inflammatory arthritis, don’t worry, it’s fine,” you know, “we’ll sort it out.”  But they did all the blood tests and then she rang me and said, “You need to come in tomorrow, I have to talk to you.”

And luckily my daughter was staying with me so I said to her, you know, “Can you come, because this sounds like they might actually know what’s happening.” And the doctor’s lovely, I still see her now, she was great. She, she just said, “Look, I’m really sorry but you have got a really nasty, rare disease.” And I thought she said it was called ‘Vagueness’ and [laughs] you know, I was post-menopausal, I thought, “Oh, god, I’ve just got over the menopause and now I’ve got this disease called Vagueness, you know, this is not fair.” [Laughs]. Anyway, she, I said, “Are you sure it’s called Vagueness?” and she said, “Well it’s vay-ge-ner’s, Wegener’s Granulomatosis,” and she gave me a leaflet and, and I, “Oh, okay, oh, all right.”

And then she said, “Don’t Google, don’t Google it because you’ll be scared stiff,” she said, “But I want you to be seen at the vasculitis clinic in the bigger hospital within the week. We have to move very fast, it’s got to your lungs, it’s” you know, “It’s obviously causing big problems with your eyes so, you know, we need to do something.” And she was the first doctor who took the rash seriously, the joint problems, she was just brilliant, you know, she understood the whole picture.

 

A doctor told Nicola she had vasculitis. Although that conversation was the first time they had met, she would have preferred him to get straight to the point.

A doctor told Nicola she had vasculitis. Although that conversation was the first time they had met, she would have preferred him to get straight to the point.

Age at interview: 46
Sex: Female
Age at diagnosis: 44
AAV (MPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

And actually, do you know what sticks in my head was, he’s, he’s amazing, you know, I’ve got a really good relationship with him now, but I didn’t know him at all. And he started with, “So tell me a little bit about you, you know, you’re obviously married, and you’ve got children? How old are your children?” and [sighs] because of my previous experiences of, I lost a baby and my dad died suddenly and then my mum obviously not long after got diagnosed with cancer, in my life, I’m used to those conversations where people are about to tell you really, really bad news.

And the, I, it was being triggered, I’m a highly sensitive person, I really pick up on things. I was, I was feeling that’s what they were doing, and I remember finding that unbearable, I just was like, just, I wish I’d just been like, “Can you just tell me?” because it felt like this drawing out and then it’s like waiting, and I think in my head I was waiting for, I don’t know. I don’t know what, I don’t think it was cancer because he’d obviously said vasculitis, I just wasn’t sure what was coming but it felt bleak.

And actually, so by the time he got to, “So you have something called vasculitis,” [laughs] and described it, weirdly, I was like, “Oh, that felt actually, okay, okay, I get what that is,” he, he wasn’t making it that this was, it wasn’t a rosy picture, he did say all the things that I kind of look back on now he said, “It will be three months of you feeling quite poorly and having a lot of medication, it will be six months of really quite a lot of rest and, you know, a different life, but it will be up to a year before you feel like yourself again.” And that felt quite difficult, but it’s been absolutely accurate, looking back.

 

Dawn thinks she shouldn’t have been told so bluntly about vasculitis and its implications.

Dawn thinks she shouldn’t have been told so bluntly about vasculitis and its implications.

Age at interview: 54
Sex: Female
Age at diagnosis: 43
AAV (GPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Then my next ENT appointment arrived with ENT at [name of local large university hospital] and they said that the results of my biopsy had come through and the nas-, because my nose bridge had collapsed, they said it confirmed the diagnosis of limited vasculitis. It was very devastating because I’d never heard of it before. I was told quite bluntly that I’d be on steroids for the rest of my life and possibly on a kidney machine. No apology was given, for misdiagnosis over the past two years.

I was sent straightaway to see the rheumatologist within that hospital. He gave me a thorough, body search, he was looking for rashes, looking at my feet, looking for different things for I suppose the vasculitis, but he also confirmed it was, it was limited, vasculitis and put me on 40 milligrams of steroids, and I was put on a drug called mycophenolate, cetirizine, diclofenac, co-codamol, Calcichew, alendronic acid, so I came out with quite a load of tablets and a shock diagnosis and a leaflet and sent home.

I was absolutely devastated. I had no-one with me at the appointment, and just come home absolutely traumatised because I had no knowledge of what this disease was about but was told it was a pretty, very rare disease. So yeah, that’s how my journey started.

How people reacted to getting a systemic vasculitis diagnosis 

A vasculitis diagnosis was a lot to take in. Salma was “quite scared at that time.” Pete said that at first he couldn’t remember the word vasculitis but “Now I can’t forget it [laughs]. Because you’ve got it forever, it doesn’t go away.” 
 
 

When Melissa was finally diagnosed with Behçet’s (a type of vasculitis), it was “the strangest feeling.”

When Melissa was finally diagnosed with Behçet’s (a type of vasculitis), it was “the strangest feeling.”

Age at interview: 22
Sex: Female
Age at diagnosis: 18
Behçet’s syndrome
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Yeah, so I got through university, ended up I, in my first year I saw a new rheumatologist. I’d been to my GP, at the university, I’d obviously moved GP. My GP was a lot more understanding than my previous GP, and living in England I could access, the Behçet’s Centre of Excellence, so, which I’d read about online, so I, I told my GP that, that it had sort of been suggested in the past that this might be it. So, they initially said, “Oh, well that’s quite a specialist area, we’ll send you to a general rheumatologist first.”

So I went to that rheumatologist, they, they sort of agreed with me that I, I couldn’t have this thing looming over me of not really knowing what it was and that it was worth the time of the consultants in the Behçet’s Centre, to at least see me and if it wasn’t that then it would be fine, but at least I’d know it was another thing of the list of the things that it wasn’t.

Yeah, so I got seen at the end of my first year at university, and the way the Behçet’s Centre works it’s a multidisciplinary team, so I saw an ophthalmologist, I saw a rheumatologist, I saw an oral medicine consultant, and I also saw a psychologist, and they sort of took the time to go through my whole history with me over a few hours.

They all sort of got together and discussed what they thought and they came out at the end of it and said, “Yes, it’s Behçet’s,” and I don’t know if I was relieved, if I was devastated, it was just the strangest feeling to finally have an answer, an answer that meant that it was going to be a lifelong thing, but I kind of, I was resigned to that at that point anyway that I’d had to change my life so much that I couldn’t see an end out of it, it was just making my life a lot more manageable.

 

Peter doesn’t remember being told he had vasculitis. It took time for him to “catch up with my own head.”

Peter doesn’t remember being told he had vasculitis. It took time for him to “catch up with my own head.”

Age at interview: 67
Sex: Male
Age at diagnosis: 50
AAV (MPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

And then I was in hospital for seven weeks in total. I, the one thing that has always caused me a problem, because latterly, which I’ll mention as we go through this, I developed depression, was that the seven weeks I had in hospital, I do not remember a single second. Absolutely nothing.

And of course, an awful lot of people said, “Your, that’s your age, you don’t remember any of it,” but my answer to that is that I was ill for six or seven months, nobody knew what was wrong with me. I collapsed, went into hospital, came out with a rare disease that I’m going to have for the rest of my life. Now that was hard to swallow, [laughs] and I would have liked to have known what was happening. I don’t remember a single thing: no conversation, no visit, no nothing. Absolutely nothing at all.

And it took me probably four or five weeks at home – because I didn’t go to work, of course – to just catch up with my own head, I think [laughs] more than anything else. And over those, virtually every day of those weeks, I was going back up to the hospital with my son who was taking me, for blood tests, because they had to keep a very close eye on that. And of course, I was then taking a lot of immunosuppressants, which I still take now. So, they needed to monitor it very, very closely.

And it took a while for me to just realise where I was, and what had happened to me. Because when I left hospital, I had no idea I had vasculitis. Somebody had to tell me because I had been told in hospital by the doctors and the consultants, but of course I don’t remember it. So, I had no idea, I went [laughs], I went into hospital and came out worse than when I went in, which was a bit of a blow to my head.

 
Many of the people we spoke to recalled their relief on getting a vasculitis diagnosis. Nicky described how she “just about danced out of the hospital,” because – even though vasculitis was serious and incurable - she finally knew what was behind her suffering and that something could be done about it. Mo felt it was a relief “because I knew that something was really, really badly wrong with me.” This relief was heightened for people who felt they had not been believed about the extent of their symptoms, or who had questioned themselves. 
 
 

As Lynn feels that her vasculitis diagnosis is “hard-won” and “fragile,” she doesn’t take it for granted.

As Lynn feels that her vasculitis diagnosis is “hard-won” and “fragile,” she doesn’t take it for granted.

Age at interview: 54
Sex: Female
Age at diagnosis: 50
Behçet’s syndrome (atypical)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

I look at my diagnosis as, it was hard-won. It took a lot of time and, and effort. So that was a, that was other people saying, “Yeah, you know what? This is not all in Lynn’s head, there is something wrong with her,” that meant a lot as well. And, and I think that when your diagnosis is hard-won, when people are saying, “Yes, I think this is, yep, this is what we think you have and we’re prepared to treat you for this, but you know what? You don’t quite meet the diagnostic criteria for it,” and whatever, it feels very, the fear at the back of my mind is that - and I think especially what happened with the locums, when my consultant went on mat-leave, is that my diagnosis was hard-won, and it would be really easy to lose it. That I could go to an appointment and, say my consultant moves on to another hospital or something happens or whatever, that I could go and someone that doesn’t know me, that doesn’t know my history, that doesn’t have the same understanding of this rare disease or whatever, could turn round and say - because this, because I know that this has happened, I know that this has happened to people with vasculitis - and say, “No, that’s not your diagnosis. No, we’re not going to treat you for this anymore.”

And what could I do about that? Apart from kick up the biggest stink and have to go through the whole complaints process again and whatever? And that’s always at the back, at the back of my mind, is that, how, how fragile my diagnosis is, and how it’s in someone else’s gift to bestow it on me. And how that bestowal of the diagnosis affects the treatment and the care that I can access, and how little control or say I have over all of this. And I think when you’ve fought really hard for a diagnosis and whatever, you never take it for granted. Never take it for granted.

How a systemic vasculitis diagnosis brought a focus and urgency to healthcare

People told us how a vasculitis diagnosis had brought a focus to their healthcare. As Sharon said, “So we now had something to work on, which was great. In one way. Because you had a name, you had something that you’d been diagnosed with, something that they then had a treatment plan for.” Grant, Charlie and Gail experienced an initial sense of urgency around their care that they hadn’t felt before their vasculitis diagnosis.
 
 

As soon as Gail’s vasculitis (“Churg”) was diagnosed, she noticed “there was no kind of hanging about” in getting the treatment organised.

As soon as Gail’s vasculitis (“Churg”) was diagnosed, she noticed “there was no kind of hanging about” in getting the treatment organised.

Age at interview: 52
Sex: Female
Age at diagnosis: 50
AAV (EGPA)
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT

Well, I think that what, as soon as I was diagnosed, people took everything seriously and, so therefore it was, the treatment was, it was all done on a very tight, it was all done very fast and there was no kind of hanging about and things, it was all [snaps fingers] straightway.

So, I felt the minute I was diagnosed that the treatment was there and excellent and the, the, I saw more consultants and registrars and SHOs than I think I even saw in my career, you know. At times there would be seven, eight, nine in the room and they would be asking me different questions and, “Do you mind if he does an examination on you?” and all this kind of thing just purely because they probably will never see Churg again. And I was, “Yeah, that’s fine.”

So immediately you kind of knew that they had diagnosed this as something really serious, and really rare, but that there was treatment for, and I really just feel as though the treatment was great.

 
Once a diagnosis of vasculitis had been made, people often had further tests to see if other organs were affected, or in preparation for treatment.
donate
Previous Page
Next Page