Managing systemic vasculitis flares and seeking help

This page is about:
• How systemic vasculitis behaves – including flaring, remission, relapse
• Recognising systemic vasculitis flares and seeking help

How systemic vasculitis behaves – including flaring, remission, relapse

People described their vasculitis behaving in a number of different ways after they had started maintenance treatment. Sometimes we heard vasculitis could be partly controlled but still active.

Grant has noticed his vasculitis starts “grumbling” when he is due another rituximab treatment.

Wendy’s doctor helped her spot the difference between her vasculitis flitting, flaring or relapsing.

Other people felt that their vasculitis was well controlled.

Peter’s vasculitis has been “pretty well stable” for two years now.

Karen views herself as “in remission” from vasculitis (“Churg-Strauss”) and is happy to keep taking immunosuppressants.

We also heard that vasculitis could attack again, and that this could include new areas of the body.

Brenda “knew immediately” that her vasculitis was relapsing, as the symptoms were the same as before.

Pete was treated for vasculitis affecting his ear, nose and throat, but it went on to attack his kidneys.

Recognising systemic vasculitis flares and seeking help

People told us it was important for them to understand their own vasculitis and to recognise when they were having a flare. It helped that sometimes the symptoms were similar to those they had experienced before they were diagnosed. Peter said he went back to having around 75 per cent of his initial symptoms within the space of two weeks; “Oh, I knew straight away, yeah.” However, vasculitis symptoms are varied and unpredictable, and people were not always sure.

Although the symptoms were similar, Steve was too ill to recognise his vasculitis was flaring badly.

Holly has had to learn the “quirks” of her vasculitis to know when to seek help and when to wait and see.

Melissa gets flares of vasculitis (Behçet’s) and infections. When they come together, it can mean “a hospital job.”

Isabel and Isabella were among those who had been told by their doctor how to recognise a flare and what to do about it, and Pete’s most recent experience was, “I could feel the flare coming back again – and phone call, and I was in there getting treated.” However, Dean and Brenda felt they weren’t listened to when they asked for help.

Isabel has giant cell arteritis (GCA), a type of vasculitis. She was told what a flare would be like and what she should do about it.

Dean coughed up blood again. This was a sign that his vasculitis had relapsed, but a hospital doctor wanted to send him home.

Treating systemic vasculitis

This page is about: Initial treatments to suppress systemic vasculitis Treatments to keep systemic vasculitis under control (maintenance treatment) Initial treatments to suppress systemic vasculitis...