Katy
After four years of a purple rash which came and went, Katy was diagnosed two years ago with urticarial vasculitis. She has been managing it with steroids but is due to start a new drug, dapsone.
Katy works full-time as a dental nurse and lives with her mum. Ethnic background: White Scottish.
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Katy is used to medical procedures, having had treatment for eczema and nasal polyps when she was growing up and more recently for repeated bladder infections. Six years ago, a hot, purple rash appeared under her skin and quickly spread all over her body. Katy was admitted to hospital for five days, treated with steroids, and discharged on the assumption she had had some sort of allergic reaction. When the same thing happened again, she was referred to dermatology.
Investigations, including a biopsy, suggested it was eczema again, but Katy felt this was something different. She describes it being like “a demon” in her body rather than on her skin. There is no pattern to how it comes and goes, and it is unaffected by creams, clothing or diet - “just one day it’ll decide.” What Katy and her friends refer to as ‘the rash’ can come with a temperature, making her shake and feel “floored” until she takes steroids.
Katy and her mum tried to find out themselves what might be wrong and what treatment might help. They felt she had urticarial vasculitis, and she transferred to a new dermatology department two years ago so she could try light treatment. Although this particular treatment was unsuccessful, Katy was pleased that the new dermatologist agreed she has urticarial vasculitis.
Katy became very unwell when ‘the rash’ appeared at the start of the 2020 COVID-19 lockdown. She says her GP was reluctant to prescribe the usual steroids and, although her dermatologist said it would be okay on this occasion, they also recommended she start the drug dapsone to suppress her immune system. This needs regular blood tests and, at the time of interview, Katy is waiting to find out whether she will get these at her GP surgery or will have to travel to the hospital.
Katy accepts there will never be a miracle cure and, although she finds ‘the rash’ annoying, she has learnt to live with it. She finds working takes her mind off it and appreciates the support she has had from work for attending appointments. Katy says she didn’t like to disagree with doctors at first but would now suggest that people keep trying for a second opinion if something is wrong and “it’s not what they say it is.”
Katy took photos to show doctors that the rash which kept coming back wasn’t eczema.
Katy took photos to show doctors that the rash which kept coming back wasn’t eczema.
I then got referred to dermatology, this was a good few years into it, and they did a skin biopsy on a bit that there was the rash, I think it was a punch biopsy? And it came back that it was eczema. So, I’m not sure, the doctor said that he thought it was just eczema and I needed to put creams on, but I knew that there was something different because when I get this rash, it would be almost like a demon was in my body, kind of. It would be hot, it would be, like, it wasn’t itchy to touch, it was sore to touch as in, like, like a bruise, and it would stay for days. Like, the rash would go down but then I would be left with, like, just bruising.
So, this went on for about four years. It was never something I did, I could never pinpoint exactly why it was doing that. And then I got referred to a different dermatology in a different area and I went to see him, and he, I showed him all the pictures because, like, throughout my journey I would take pictures of it so that, like, I knew that it wasn’t eczema. Like, I’d had eczema for my whole life and it’s completely different. Like, you could put creams on, you could do anything, and it wouldn’t take it away? It seemed to hit every single part of my body before it would go away, like, it would start on one bit and then go right through me, and then once it had hit every single bit of my body, it would go. So, he, as soon as I got there, he said to me, “I think it’s urticarial vasculitis you have.” And my mum’s actually a nurse, and she had said all along, “I think that’s what you’ve got,” because we obviously did our own research. But it took this one dermatologist to say, “No, I think this is what you’ve got.”
When Katy’s vasculitis rash appears, “I probably get angry for five minutes and then I’m over it.”
When Katy’s vasculitis rash appears, “I probably get angry for five minutes and then I’m over it.”
As long as it’s monitored, you know? I get these blood tests every few months to check everything and I’m on the right treatment and I don’t really see any difference, you know? I’ve learnt to live with it so that’s just what, what I’ll do. I think it’s very difficult at the start and, you know, it is, it is annoying, sometimes when it does come up, you know, you’re like [sighs], “Oh, why did you want to come today?” or if you’ve got something on and it comes. But I think you just learn to live with it, I think that’s the same as everything, like you learn to live with it. And if you don’t, then it’s only going to get you down. I feel anyway. I, that’s what I look in life, I think. I’ve got to change, I’ve got to do it for myself.
Do you talk to it? It almost sounds like you talk to it [laughs].
Yeah [laughs] Nah, I just - I think, it’s ‘the rash’, it’s always called ‘the rash’ and you know, “Oh, there’s ‘the rash’.” I think because it’s always annoyed me, I get angry at it because I’m like, “Och, why, why today?” Like, it’s just always there and I know it will be, it’s never going to disappear. So. I think I probably get angry for five minutes and then I’m over it. Like. I get on with it, get on with my day.
When her vasculitis rash appears, Katy hates that people ask what she has or hasn’t done differently.
When her vasculitis rash appears, Katy hates that people ask what she has or hasn’t done differently.
It must be – it must be strange trying to describe it to your friends and…
Yeah. Like, I often say to them, like, I’d say, they’ll say, “Oh, what’s wrong?” and I’m like, “Oh, it’s just ‘the rash’.” I call it ‘the rash’ because I don’t know what else to call it. And like, if they see it, they obviously [puts on jokey voice] “There’s ‘the rash’.” Like, we joke about it because they get it now, it’s not - you know, it’s just part of me and I sometimes get it at work, and. You know? That’s just life, I can’t, I can’t make it go away. And there’s nothing I do specifically that it comes. It just one day it’ll decide. And like I’ll come down in the morning and I’ll say to mum, “Oh, the rash has appeared,” or - and sometimes she just forgets herself and she’ll say, “Well, what have you done differently?” and I do get quite – I’m like, “Nothing, I haven’t done anything differently.” Like, I hate when people say to me, “Oh, is that an allergic reaction?” or, you know, “Have you eaten something?” And I know that’s, that’s normal, I would probably say that to someone, but it’s so repetitive. I’m like, “No, I haven’t eaten anything. No, I’m not allergic to anything. It’s just life.”
Katy has urticarial vasculitis. She experienced two dermatology services as “completely different.”
Katy has urticarial vasculitis. She experienced two dermatology services as “completely different.”
So, you said that you did switch from one area to another. What had led up to that happening?
I, because I was getting light treatment in a different area, like, that was closest – where I live is closer to another area. So, where the light treatment was, was two minutes away from me, whereas my - the hospital was 30 minutes but it’s in a different area. So I got transferred to another one. And that’s when I saw the new dermatologist. Because it was closer to my house.
And having – it’s always quite good when we can speak to people who’ve got experience of more than one service because they can often compare them and maybe spot things that other people wouldn’t spot. Would you say that there’s in anything that people do that’s been better than has been handled somewhere else?
One hundred per cent. I think it’s just so different from where I got the first few years to where I’ve got just now, is completely different. Way. Like, it’s so much faster down here. I got my diagnosis, I got treatment that obviously didn’t work but it could have, and now I’m on to my next treatment. And that’s all in the space of two years. Not even. So yeah. I definitely think there’s a difference.
And do you have any sense of why they’re able to do that and the previous place wasn’t?
No idea. No.
Katy knew that her symptoms were different from eczema. She says to tell doctors “Exactly how you feel” and, if you don’t think what they’re saying is right, get a second opinion.
Katy knew that her symptoms were different from eczema. She says to tell doctors “Exactly how you feel” and, if you don’t think what they’re saying is right, get a second opinion.
If somebody was to be experiencing these kinds of things, what would you advise them to do?
Hmm. Go to their GP as soon as it happens. I don’t really know [laughs]. Just like, keep pushing for - if you don’t think what they’re telling you is right, just keep pushing for it. Whereas, you know, I got there in the end, but it took five years. You know, it didn’t just take one doctor or – I think if you don’t think it’s right what they’re saying, then get a second opinion or keep trying. Until you get what you want.
So, there’s something in what you’re saying there about speedier action when you first raise something like this, for it to be recognised that it’s…
There’s something wrong. And it’s not what they say it is. So, I would just keep trying and tell them exactly how you feel. Maybe be a bit more determined. Because I was quite blasé. I was a bit like, “Oh, okay.” Like, I knew it wasn’t eczema because I knew it was different, but if a doctor is telling you that, you don’t really fight, you don’t really not disagree with them as such. But seeing a totally different doctor and him saying it’s something completely different was good, because I knew it was something.