Making decisions about increasing, reducing or changing systemic vasculitis medication

This page is about:
  • Making decisions about systemic vasculitis medication
  • How infection risk affects systemic vasculitis treatment decisions
  • Making decisions about reducing reliance on steroids
The aim of treatment is to reduce medication to the lowest level of immunosuppression needed to keep the vasculitis suppressed.

Making decisions about systemic vasculitis medication

Sometimes people were too ill with vasculitis to take part in decisions about their treatment.

Claudia had kidney dialysis while she was in intensive care with vasculitis but wasn’t aware of this.

Even when people were well enough to make decisions, Gail was among those who had noticed vasculitis treatment was – to an extent – just “what we have to do.” Claudia also emphasised that “trial and error” with different immunosuppressants is involved to find what best suits each individual. It was not always clear to us how much of a part people played in treatment decisions. However, those who did tell us that their consultants discuss options with them felt it was important.

Jeremy joined a drug trial as part of his vasculitis treatment after his consultant discussed the options.

Diane thought she might need a biologic drug, but her vasculitis consultant suggested switching from oral methotrexate to injections.

After reducing her mycophenolate dose as agreed, Gail’s vasculitis (“Churg”) has flared. She wasn’t able to discuss this with her usual consultant and is now unsure what to do.

How infection risk affects systemic vasculitis treatment decisions

People told us that there is a complicated relationship between vasculitis, the medication used to treat it, and infections.

Because infections trigger her vasculitis flares, Mo’s first “line of action” is an antibiotic.

While infections are “a threat,” Melissa decided she needs immunosuppression to “have a life.”

Like Mo and Melissa, infections were a real problem for some of the people we spoke to. Sharon developed pneumonia and E. coli. It took her a long time to recover and meant she needed emergency rather than planned kidney dialysis.

Making decisions about reducing reliance on steroids

It was usual for people to be prescribed high doses of steroids both initially and following a relapse, often alongside other medication to suppress the immune system. Due to the long-term side effects of steroids, the dose needs to be reduced over time. However, as this steroid “tapering” also has side effects, it has to be done gradually. Isabel was given a written schedule at the start of her treatment but was now going “a bit slower.”

Richard knew about reducing steroids as he had polymyalgia rheumatica (PMR) before vasculitis. This gives him “confidence” to use the schedule as a suggestion rather than a rule.

Graham regrets trying to reduce his steroids so much, as his vasculitis suddenly relapsed.

It was common for people to remain on a low dose of steroids as part of their maintenance treatment, and they varied in how important they felt it was to come off steroids altogether. Nicola and Dawn had both wanted this desperately, whereas Richard said, “I want to come off steroids but I’m not in some hell for leather rush to get down to zero.”
Almost everyone we spoke to told us that doctors had encouraged them to reduce their reliance on steroids by combining or gradually replacing them with other immunosuppressants. However, among those who have a type of vasculitis called giant cell arteritis (GCA), ideas about using these “steroid sparers” were mixed.

Roberta is already on one “horrible” drug for vasculitis and doesn’t really want to go on to another.

Graham lost vision in one eye through GCA. Although his rheumatologist would like him to take methotrexate or tocilizumab “for my own good,” Graham is concerned in case this affects the sight in his other eye. Richard has not been offered steroid sparers and assumes this is because steroids are “incredibly cheap…simple, effective.” However, Isabel’s consultant encouraged her from the start to use methotrexate as well as steroids.