Antineutrophil cytoplasmic antibodies (ANCA)–associated vasculitis, or AAV, causes inflammation of the blood vessels and can affect many parts of the body, including multiple organs. Because of this, AAV care is usually managed by a team of medical specialists.
Many people receive a consultation or are treated at vasculitis centers or academic hospitals, where doctors have specific experience with AAV. No matter where you get treatment, having a coordinated care team is essential. It’s one of the reasons outcomes for AAV are much better today than they were in the past. While new treatments offer real hope, AAV remains a condition that requires long-term management. Even after reaching remission, you will need regular follow-ups to stay in remission, monitor medication side effects, and prevent relapse.
Left untreated, AAV can lead to serious complications, including kidney failure, structural lung damage, and an increased risk of cardiovascular disease. And the treatment itself, which often includes long-term steroid use, comes with its own health risks. Given these different aspects of AAV, building the right care team is a crucial part of managing the disease.
Here are a few members to consider, depending on your overall health and what parts of your body are affected:
Rheumatologist In most cases, the lead doctor will be a rheumatologist, says Robert Spiera, MD, a rheumatologist at the Hospital for Special Surgery in New York City. Rheumatologists are specialists in inflammatory autoimmune conditions. As the lead doctor, they will likely make most of the therapy decisions, which often involves a combination of immunosuppressants and anti-inflammatory medications. They will work to get you in remission and keep you there.
“This disease is in our domain. We deal with systemic autoimmune diseases. We are very comfortable with the medicines, and we are trained in multi systems. We are not just thinking of kidneys or just thinking of nerves or just joints or just lungs,” says Dr. Spiera. “And we are good at monitoring these medicines and addressing their side effects.”
They can help monitor medication side effects, such as high blood pressure or hypoglycemia, watch for signs of infection (since you are at higher risk), and assess your mental health.
Nephrologist The organ most commonly affected by AAV are the kidneys, especially with the type of AAV called microscopic polyangiitis. A nephrologist specializes in the management of kidney disease. If you only have kidney involvement, a nephrologist may be your lead doctor. If you require a kidney biopsy, that would also be in the nephrologist’s domain.
Pulmonologist You will need a pulmonologist if you have symptoms such as hemorrhaging in the lungs. “Pulmonologists are often involved if you have endobronchial disease or if there is a lung nodule from the disease,” says Spiera. And they might help as part of the support team if you ever end up in intensive care with a flare-up. In rare cases, they might do stenting procedures to bypass areas of inflammation, he says.
Neurologist A neurologist may be consulted if there is nerve damage or dysfunction. According to Spiera, a neurologist can be helpful in providing an objective opinion about neurological damage, often evaluating a person every six months.
Dermatologist Some possible symptoms of AAV are itchy, red bumps, blisters, or painful ulcers. You may see a dermatologist to get a biopsy to confirm the diagnosis of the disease, as well as manage any skin symptoms.
The Takeaway
- ANCA-associated vasculitis (AAV) is often treated by a team of doctors, because it affects multiple organs and systems in the body.
- In most cases, a rheumatologist will head up your medical team, as they are specialists in autoimmune diseases.
- You may also have other specialists involved in your care, such as a nephrologist, ophthalmologist, otolaryngologist, or pulmonologist, depending on where AAV has affected your body.


















Leave a Reply