Systemic vasculitis

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Angharad So again, there were lots of different signs that things weren’t right but no-one was putting the pieces together? It was just always as if everything was very separate. And then because of obviously I’d had this diagnosis of a blood clot, it was all centred around that.   Isabella But it’s just so peculiar, out of the blue. But actually, getting a name on it was, was good, you know? Because I realised by then, by the time I’d got to hospital, that I must have something pretty serious, right enough. And my daughter kept saying to me afterwards, she said, “You were really ill, you really were ill. You didn’t realise you were, but you were really ill.” [Laughs].   Pete Now I’d heard of people who had sinusitis, tonsillitis, laryngitis, and when I got this diagnosis of vasculitis, I thought it was something similar. Now I couldn’t have been further from the truth, because as soon as I Googled it, I realised just how nasty it was, that it was something, it just wasn’t a mild illness.   Holly I guess it was, it was a lot for at 19 to be like, “Oh you’re having chemotherapy,” it’s like, “that’s strange,” also find out all this world of like, you know, “oh, we’ll treat you with chemotherapy,” it’s like, I thought, I thought that was a drug that they use for cancer, you know? It’s not something that you realise that they use for other really serious things. You know, it was kind of my world sort of got turned upside down.   Roberta 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.   Steve You know, when I was in hospital, in the next room to me was a teenager with the same condition, and on the other side was an 80-year-old lady with the same condition, and at that point I was in my late 50s, so there you go, it happens to a range of people and there’s very little you can do about it. You’ve either got it or you haven’t and it’s either going to flare up and attack you or it isn’t. And that’s it.   Nicky Once the infliximab and the adalimumab started working, that I couldn’t believe how ill I had felt and how rotten I had felt for so many years, until all the symptoms had gone away. It was just amazing, and I just felt like a different person, you know, it’s, you don’t realise how debilitated you are until that debilitation is taken away.
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In this section you can find out about the experience of having systemic vasculitis by seeing and hearing people share their personal stories.

From June 2020 to June 2021, our researcher Avril interviewed 32 people from the four countries of the UK about their experiences of systemic vasculitis and healthcare. People were aged between 22 and 81 at the time of interview. Their age when they were diagnosed with systemic vasculitis varied from 18 to 74. Some had symptoms many years before they were diagnosed while, for others, symptoms had come on more suddenly.

We spoke to people with different types of systemic vasculitis, including ANCA associated vasculitis (AAV), giant cell arteritis (GCA), Takayasu arteritis and Behçet’s syndrome.

Due to the COVID-19 pandemic, all interviews were done online.

A film has also been created from the material which can be used as a catalyst for questions in an academic or professional setting.

What we do and don’t cover

Vasculitis is a group of rare inflammatory diseases that cause inflammation of the blood vessels. Any blood vessel in any part of the body can be affected. There are different types of vasculitis. Although we use the word ‘vasculitis’ throughout, this website is about primary systemic vasculitis. ‘Primary’ means the vasculitis isn’t a result of another illness, and ‘systemic’ means it can involve any part of the body.

There are different types of systemic vasculitis, and the problems that result can range from mild to very severe and life-threatening. Even people with the same type can be affected in very different ways, and to different degrees, meaning that individual care needs are very different.

While systemic vasculitis is not curable and can keep coming back, it can be controlled using drugs that suppress the immune system. Early recognition and diagnosis, followed by appropriate and effective treatment, is important to prevent damage to the body. However, systemic vasculitis is not easy to diagnose. As well as being rare, it can affect many different organs such as the kidneys, heart, lungs, nerves, ears and eyes. This results in a variety of possible symptoms that can easily be confused with other conditions.

Other types of vasculitis are not covered by this website. These include those that occur in people who have other conditions such as rheumatoid arthritis or lupus. They also include those that are caused by infections or reactions to certain drugs and chemicals. Often this kind of vasculitis is localised, for example to the skin, and may not need any treatment.

Funded by

This study is part of a programme of research funded by Versus Arthritis to understand Vasculitis Outcomes In relation to Care ExperienceS (VOICES). (Grant Reference Number: 22088, Chief Investigator Rosemary Hollick).