Challenges of getting to a systemic vasculitis diagnosis

This page covers:
  • Becoming concerned and seeking help for symptoms
  • Feeling listened to or dismissed after seeking help for symptoms
  • Different routes to a systemic vasculitis diagnosis
  • Perseverance in getting to a systemic vasculitis diagnosis
Systemic vasculitis needs to be identified and treated as quickly as possible. However, it is not easy to diagnose because it is rare and has a variety of possible symptoms.

Becoming concerned and seeking help for symptoms

People spoke at length about the series of events leading to a vasculitis diagnosis. From when they first noticed a change in their health, it had taken some of them years to get to that point, while for others it was months or even weeks.

For Wendy, early symptoms of vasculitis were “so minor that it didn’t seem worth bothering the doctor.”

Holly’s early vasculitis symptoms were so “obviously very strange” that she knew she had to see a doctor.

Among the people we spoke to, the first changes in their health were often subtle or easily put down to something routine. Diane had swollen legs and an insect bite from a holiday, and thought the fatigue, aches and pains which came after were “just work stress, it’s just normal.” Lynn initially “made a whole load of excuses” for why her hips and back were sore on holiday, such as not sleeping in her own bed. Nicola at first “put off going to the doctor’s” as she felt her symptoms could be explained by stressful life events, being perimenopausal, and walking a lot on holiday. Although Steve’s symptoms built up quickly, he thought, “Oh, I’ve got another seasonal bug, it’ll go away, no need to bother the doctor.”
It was also common for people to use over-counter medication before they consulted a healthcare professional. Months before Salma and Claudia first went to their GP, they felt like they always had a cold. Salma used Nurofen and Claudia recalled, “I used to take paracetamol like candies all the time, no effect.” When she first suffered facial pain, Roberta “tried all the usual, Sinutab, nasal sprays etcetera; they weren’t working.”

Feeling listened to or dismissed after seeking help for symptoms

On seeking help, people told us that GPs often treated their symptoms in a routine way – for example, prescribing antibiotics or steroids for infections, or drugs to reduce high blood pressure or inflammation. They also provided reassurance. Isabella, for example, was told that a swelling in her neck might be the result of steroids prescribed for a chest infection, and thought, “Och well, I’ll be fine in a week or two.”

Before Nicky’s vasculitis was diagnosed, she told her GP she couldn’t live any more with “diabolical” mouth ulcers. She left in tears when the GP prescribed mouthwash.

As people’s symptoms worsened, they made multiple visits to GPs or hospital consultants. Lynn, Dean and Jane X spoke warmly of how kind and helpful their GP had been, but Gail had the opposite experience. Charlie felt “shrugged off” by ENT (ear, nose and throat) doctors and Peter began to feel that doctors had “given up on me.” Lynn, Angharad and Diane were frustrated when doctors suggested that their physical symptoms were a result of anxiety. People told us that feeling they had not been listened to or believed could leave them thinking that something important was being missed, struggling with their mental health or losing trust in doctors.

Before getting a vasculitis diagnosis, Lynn was devastated to find out that some healthcare professionals didn’t believe her symptoms were real. She went to discuss this with her GP.

Before she was diagnosed with vasculitis, Dawn felt that no-one was listening to her.

Sometimes people spoke about how family, work colleagues or friends had supported them when they felt they were not being heard. For example, when she was in hospital, Mo’s father-law (a retired GP) urged doctors to listen to what she was saying about her symptoms being connected.

Different routes to a systemic vasculitis diagnosis

When Isabel and Nicola first sought help for their symptoms, their GPs recognised the potential for vasculitis. The investigations that led to Jeremy’s vasculitis diagnosis were prompted by a routine blood test, although he recalled “no sense of urgency” at that point.

Isabel’s GP saw signs of giant cell arteritis (a type of vasculitis) and sent her quickly to rheumatology.

Among the people we spoke to, however, it was common for the route to a vasculitis diagnosis to be more complicated.

Before getting a vasculitis diagnosis, Melissa remembers being passed from person to person until “the buck landed with rheumatology.”

As Melissa found, parts of the search for a diagnosis could be like going from pillar to post. Roberta described going back and forth between rheumatology, neurology, her GP and accident and emergency while they debated her diagnosis. Lynn described this process as “the multidisciplinary merry-go-round where no one is looking at you holistically; you go to one person to look at one thing and someone else is looking at another thing, but they’re not looking at you as a whole.”

Getting his sinuses drained gave Grant temporary relief but underlying vasculitis meant the problem always came back.

Like Grant, people often talked about part of the “journey” to a vasculitis diagnosis as if they had been stuck in a loop. Angharad was told her recurring symptoms were likely to be a blood clot until she reached a point where, “I had no time for this blood clot sort of story because it was something I’d gone through so many times and it, you know, no evidence of that.” Mo, Dawn and Charlie were repeatedly prescribed antibiotics for ear, nose and throat problems, while Gail had repeated surgery for polyps in her nose.

Perseverance in getting to a systemic vasculitis diagnosis

Unsurprisingly, many people we spoke to felt that perseverance had been important. Mo and Sharon kept “going back” to healthcare professionals, Jane X and Richard had been “determined,” Marie “kind of stamped my foot a wee bit,” and Brenda pleaded with her doctor to be admitted to hospital. Charlie, Gail and Lynn were clear that going back repeatedly when they felt so ill was challenging but, as Melissa said, “You’re sort of desperate to get the help that you need.”

Katy took photos to show doctors that the rash which kept coming back wasn’t eczema.

As part of persevering, people often talked about gathering “evidence.” Jane X, Gail and Dean’s wife took photos of things like skin rashes, blood or pus to show to their doctors. Richard completed a symptom checklist from a voluntary organisation in case it was needed to back up what he was saying.
Sometimes people told us how others had helped them to persevere or had persevered on their behalf.

When numerous appointments were “going nowhere,” an advanced nurse practitioner pushed for Charlie’s symptoms to be taken seriously and urgently.

Wendy and Gail’s colleagues and friends urged them to keep going back to their GP. It meant a lot to Lynn that her GP “didn’t understand what was happening but was willing to facilitate me.”
Some people mentioned how they tried to work out what might be going on so they could find a way to fix it. Jane X had spells of trying a gluten or milk-free diet. Katy said that she used “I don’t know how many creams, potions, bath stuff. I even stopped eating foods. I did loads and nothing stopped it.” Before he was diagnosed, Grant bought prescription sunglasses as he wondered if daylight could be triggering his symptoms.

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...