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

Vasculitis treatment involves drugs which suppress the immune system to stop the body attacking its own blood vessels. These drugs all have side effects. People told us it was routine to start with “aggressive” high dose steroids (prednisolone), either alone or together with othe/Systemic-Vasculitis/Side-effects-steroids-and-other-systemic-vasculitis-medicationr medication.

With high dose steroids, Marie’s vasculitis headaches were gone. She “felt like leaping like a gazelle.”

Steroids had an “amazing” impact on Charlie’s vasculitis symptoms. A biologic drug (rituximab) had a more gradual effect.

For some types of vasculitis, people also had a type of chemotherapy (cyclophosphamide).

When Holly realised vasculitis treatment included chemotherapy, “my world sort of got turned upside down.”

Once Karen was home from hospital, she continued with chemotherapy for her vasculitis (“Churg-Strauss”). Her parents used to take her out for lunch before it.

When people were very unwell with vasculitis, they sometimes had other treatments such as blood transfusions, plasma exchange (to remove plasma from the blood and replace it with new plasma) and kidney dialysis. Treatment decisions often had to be made quickly and – because they were unwell – people were not always aware of what was happening at the time.

Nicola’s kidneys weren’t recovering from vasculitis as expected. The day she started plasma exchange was “just an onslaught” among a “manic three days.”

Claudia had plasma exchange for vasculitis, but it didn’t go to plan. This was “traumatising and shocking” for her husband.

Steve had to go on to kidney dialysis as well as other medication when his vasculitis relapsed and progressed.

Vasculitis damaged Steve’s kidneys. He says dialysis isn’t painful, but he’s “just exhausted” afterwards.

With initial treatment, some people felt better more quickly than others. Grant couldn’t believe that, over the three weeks he spent in hospital, “I was literally bed-bound and then they got you walking out of there.” Jane on the other hand was in hospital for 23 weeks.

Treatments to keep systemic vasculitis under control (maintenance treatment)

To keep vasculitis under control, people had maintenance treatment. This could include a lower dose of steroids, other standard immunosuppressants, and biologic immunosuppressants. For some people it also included medication for high blood pressure, pain and infections. Jane X – who used to be a pharmacist – is pleased that doctors now have “more modern” biologic drugs to offer people to keep vasculitis under control, but added “for me, azathioprine has worked so I don’t need anything else.”

Mo is on a range of treatments to keep vasculitis under control but "even now I get regular flare ups."

Steroids and methotrexate control Isabel’s vasculitis. She’s “pleased with the way everything’s going.”

Rituximab finally brought Dawn’s vasculitis into remission. She has been off medication for two years.

People varied in their response to immunosuppression. We heard many examples of how people enjoyed a better quality of life once vasculitis was treated. We also heard that they could be left with some symptoms as well as the damage that had already been done.

Once she found a vasculitis treatment that worked, Nicky “felt like a different person.”

A biologic drug gives Lynn a better quality of life with vasculitis but “wasn’t the miracle cure that I was hoping for.”

The symptoms Peter had experienced over many months were “dulled down, diminished or gone all together.” However, Wendy’s vasculitis has proved difficult to control, and Mo found “the first five to six years were shit. Really, really tough. Just living with it, trying to get it under control.”