Messages for other people with systemic vasculitis

This page covers the key messages the people we spoke to had for other people who have – or might have – systemic vasculitis:
  • Seek help sooner rather than later
  • Find a way to live with systemic vasculitis

Seek help sooner rather than later

The people we spoke to were keen to encourage other people with puzzling symptoms to seek help as early as possible.

In the past, Grant felt “a bit of reluctance” to go to the doctor. Now he would “try to get to the bottom of things sooner.”

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.

People suggested:
  • Don’t ignore symptoms that are troubling you – especially if they’re getting worse
  • Consider going for health checks when they are offered
  • Be aware that, if systemic vasculitis is the problem, you and your doctors will need to act quickly
We also heard that there are things you can consider doing if you don’t feel you’re being listened to. Examples included “insisting, insisting, insisting” on getting help; taking someone with you to an appointment for support; asking the doctor to document your concerns; going to a different doctor or a different part of the health service; asking for a second opinion; seeking advice from a patient liaison service.

Find a way to live with systemic vasculitis

People also had advice for anyone who has been diagnosed with systemic vasculitis.

Salma says vasculitis is life changing, so it’s important to “listen to your body” and ask your doctors about anything you want to know.

Although vasculitis needs strong drugs, Jane X says don’t be frightened, as they can be “transformative.”

To get the most out of your time with doctors, people suggested:
  • Don’t be afraid of the doctors who are treating you – it’s OK to ask questions
  • Make notes about your symptoms and questions and take them with you to appointments
  • Find out more about vasculitis (from information leaflets, websites and support groups) so that you can recognise symptoms and make decisions with your doctors about treatment
  • Be aware that treating vasculitis can involve trial and error – and that what works for someone else might not be best for you

Richard has polymyalgia rheumatica (PMR) as well as a type of vasculitis called giant cell arteritis (GCA). He thinks that, while internet forums are important, they can also “just mislead a patient.”

Many of the people we spoke to wanted to offer hope to others with vasculitis, while recognising that can be hard sometimes. Some also said it’s helpful to accept a new normal. As Jane X said, “you’ll have a better quality of life if you learn to live with it rather than fight it. So, if there’s something I can’t do or I know will make me feel rubbish, then I don’t do it.”

Pete says that, for people who benefit from medication, “there is life after vasculitis.”

For Gail, moving forward with vasculitis is about starting “to like who you are” and noticing “tiny achievements” that matter.

Suggestions for living with vasculitis included:
  • Don’t pressure yourself to be the same as you were before your diagnosis
  • Try not to let vasculitis get you down – but accept that sometimes it will
  • Do what you can to make yourself feel better

Karen wishes she had learnt earlier in life – before vasculitis – how much exercise can improve wellbeing.