Symptoms of systemic vasculitis

This page covers:
  • Having symptoms appear in different areas of the body
  • Finding that symptoms are getting worse
  • Wondering what the body will do next
  • Piecing together the symptoms

Having symptoms appear in different areas of the body

Pain and extreme fatigue were common among the people we spoke to. They described a wide range of symptoms in many different parts of the body. Symptoms of vasculitis could present as infection, pain, swelling or lumps, bleeding, loss of feeling, strength or movement, or a change in appearance, sensation or function of a body part.

Before Isabella was diagnosed with vasculitis, she’d had “bouts” of chest infections, stomach problems and painful joints for many years.

Salma’s vasculitis symptoms included infections, pain and other worrying changes throughout her body.

Like Salma, Grant, Mo, Pete and Charlie experienced ear, nose and throat symptoms. These could include sinusitis, a runny, crusty, blocked or bleeding nose, nasal polyps, voice problems, tinnitus and hearing loss. In addition, Dawn found that, “My nose appearance was beginning to change, my face was beginning to swell; basically it looked like somebody had punched me in the face.”
People talked about a similar range of problems affecting other areas of their body such as their eyes (e.g. bloodshot, painful, sight loss), head (e.g. headache, tingling scalp), jaw, chest (e.g. wheezing, breathlessness, infection, clots), tummy, joints, skin (e.g. rashes, blisters), hands and feet (e.g. cramps, numbness, loss of power). In addition, similar symptoms could appear in different areas of the body; Nicky and Melissa, for example, were affected by oral and genital ulcers.

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.”

Repeated episodes of mouth peeling and ulcers took their toll on Melissa and her family.

Of the people we spoke to, only Jeremy felt he had been effectively “symptomless.” However, even he had what he now knows was a vasculitis rash.

Finding that symptoms are getting worse

It was common for people to tell us how their symptoms built up. They described getting more symptoms, which became more intense, with the whole process seeming to gather momentum.

Gail’s vasculitis symptoms started subtly. She felt scared as they grew in number, intensity and speed.

Peter said, “All during this period my symptoms were getting worse, a list as long as your arm…It got to the point where I couldn’t actually walk up a normal indoor flight of steps…it was getting pretty much out of hand.” Many noted that symptoms seemed to move around their body. Some people talked about a particular symptom as if it had been a last straw – in Grant’s case when his eyelid drooped, and for Mo, Angharad and Wendy, when they coughed up blood. Like Gail, people often talked about their symptoms getting worse over many years, while for others – including Steve and Jane – it was more sudden and dramatic.

Jane remembers only “a couple of weeks” of what she now knows were vasculitis symptoms before she collapsed with a cardiac arrest.

Wondering what the body will do next

People often told us that their symptoms were unpredictable and strange, and not something that they could control. People like Katy and Jane X found symptoms would come and go without any apparent reason. This also frustrated Isabella, as “when I was well, I was really, really well.”

Jane X found it peculiar when her symptoms would flare up very suddenly then disappear. She now knows this was vasculitis.

In addition, people told us about more general signs from the body that something wasn’t right. Graham, Brenda and Angharad lost weight. Charlie recalled “getting more and more unwell with these awful night sweats.” Wendy talked about getting very cold, and Holly said she still doesn’t know why “it makes me very unwell to be around heat – the hot weather is horrible, and also cold weather as well. I think my body just has a problem regulating heat.” While the people we spoke to felt that the symptoms their bodies were showing were real, they questioned themselves, and also worried that other people might not be convinced.

Lynn doesn’t always talk about the more “bizarre” symptoms of her vasculitis.

Although Marie was under stress, she felt that her symptoms suggested a more physical cause.

Piecing together the symptoms

Wendy was just one of many people who made notes before their interview to help them remember their “very complicated” sequence of symptoms and events before they were diagnosed with vasculitis. Overall, people had been confused and scared about what was happening to them, and this was made worse by a relentless tiredness and exhaustion. It was only looking back that Karen recognised there were “tell-tale signs,” or that people could see their symptoms were more than could be explained away by normal reactions to work and life events. In recalling what had happened and when, it was common to pin down the appearance of particular symptoms to memorable events such as holidays.

The initially “vague” symptoms of vasculitis made Sharon wonder if it was just her age.

Richard was unusual among the people we spoke to. He already had a condition called polymyalgia rheumatica (PMR), which is linked with a type of vasculitis called giant cell arteritis (GCA). As he knew what GCA symptoms were, he realised there was a pattern to what was happening to him.

Because Richard already knew about vasculitis through having polymyalgia rheumatica (PMR), his symptoms were like “pieces of the jigsaw.”