This page is about:
- Damage to the body from systemic vasculitis
- Systemic vasculitis and surgical treatments
- Systemic vasculitis and other long-term health conditions
Damage to the body from systemic vasculitis
Because vasculitis attacks blood vessels, it can damage organs and parts of the body. Examples include kidneys, lungs, ears, nose, airway, eyes, stomach, hands and feet (through nerve damage) and the heart. The problems that result can range from mild to very severe and life-threatening.
Vasculitis caused tearing and damage to Diane’s aorta (the main blood vessel coming out of her heart).
People told us that, once their vasculitis was suppressed, the body could sometimes partly or fully recover. Charlie regained his hearing, and Grant’s voice and swallow returned to normal. Brenda’s nerve damage improved: “I was in a walking frame for about four months and then I was on a stick for maybe about a year.” Although Nicola’s kidney damage seemed to point towards her needing dialysis and a transplant, over the next two years “my kidneys just got better and better.”
However, recovery happened over time and was not predictable. Some people were left living with damage that had already been done.
Losing her hearing was “very frustrating” for Mo but she manages as best she can with hearing aids.
Isabella was “surprised” by how much nerve damage vasculitis caused in her arms and legs.
Graham has lost the sight in one eye. Mo, Pete and Grant depend on hearing aids. Dean has lung scarring and Jane has a brain injury. Steve is on regular kidney dialysis and Jane is being considered for a kidney transplant. Angharad and Lynn are on medication as a result of damage to their heart. Gail is disabled from the nerve damage caused by vasculitis.
Grant and Nicky said that vasculitis puts them at risk of developing other conditions such as a stroke or deep vein thrombosis (blood clots). Roberta didn’t want to take steroids but realised “I’ve got to take them” when her doctor explained that otherwise she could go blind or have a stroke.
Systemic vasculitis and surgical treatments
We heard that surgical treatments were used in different situations. Emergency surgical procedures were sometimes necessary whilst vasculitis was active. As Diane put it, “mine was a life-or-death situation, but if they had of caught mine six months before, they necessarily maybe wouldn’t have operated anyway because they don’t like to operate on active vasculitis.”
Charlie’s vasculitis affected his airway. He had throat surgeries and a tracheostomy to help him breathe.
Once their vasculitis was ‘in remission,’ some people had surgery to replace or reconstruct body parts damaged by vasculitis.
Sharon is “doing just grand” with a kidney transplant, but it was an emotional process for all the family.
Dawn’s surgeon did “an amazing job” repairing her nose after it was damaged by vasculitis. At first, she was “terrified” to blow it.
Having vasculitis also influenced surgery for other health problems. Nicky has had a gallbladder operation and is waiting for a knee operation. She said it was very important to inform the surgeon so they could take vasculitis and its medication into consideration. Diane had to (gradually) stop her immunosuppressant medication before she had gallbladder surgery. Wendy said that operations to remove “loose bodies” from her knee and repair her stomach valve were possible but “there’s issues around the stability of my vasculitis and it’s a real toss-up whether it’s worth doing.”
Systemic vasculitis and other long-term health conditions
We heard that vasculitis could make people’s other long-term conditions worse and that this could lead to difficulties with medication. Jane X’s liver condition (primary biliary cholangitis) was stable on medication until she got vasculitis, “and the liver doctor thought that the new problem was probably driving the liver problem, making it worse somehow.” Peter already had a lung condition (chronic obstructive pulmonary disease (COPD)), which makes treating his vasculitis more complicated.
Marie, Salma and Holly told us they were healthy until they got vasculitis but have developed other long-term conditions that also cause pain and fatigue. Holly wondered, “if I’d never developed the vasculitis, would I have gained these other health conditions or not?”
Vasculitis and its medication “triggered” Salma’s fibromyalgia, blood pressure problems and steroid-induced diabetes.
People told us that they – or their doctors – were sometimes uncertain whether or how another health condition was linked to vasculitis. Grant, Katy, Melissa and Salma, for example, have seen urologists for problems with their bladder.
Grant had an operation to fix a slow urine flow. He is unsure if this is linked to his vasculitis.
When urologists investigated Melissa’s urine infections, they “couldn’t find a clear reason apart from the immunosuppressants I was taking, so it’s sort of ‘carry on as you are’.” For Salma, it’s “difficult to say” if her incontinence is related to her vasculitis, medication or something else.