Getting a diagnosis of AAV can take time. The symptoms can look like many other conditions, and they often show up one after another. A typical diagnosis journey may look like this:

1. First visit
   You may start with a primary care doctor because you feel very tired, have sinus problems, a rash, or shortness of breath.
2. Referral to a specialist
   If your doctor is worried about your kidneys, lungs, nerves, or immune system, they may send you to a specialist, such as a rheumatologist, nephrologist, pulmonologist, or neurologist.
3. Blood and urine tests
   • ANCA blood test, to look for the antibodies that give AAV its name
   • Kidney tests and urine tests, to check for blood or protein
   • Basic labs, to check for inflammation and organ function
4. Imaging tests
   • Chest X-ray or CT scan, to look at your lungs
   • Sinus imaging, to look at your nose and sinuses
5. Biopsy
   In many cases, doctors try to take a tiny piece of tissue from an affected organ, such as the kidney, skin, lung, or nerve. A pathologist looks at it under a microscope to see signs of vasculitis.
6. Diagnosis and plan
   Your care team reviews all the results and decides if you have AAV and which type. Then they create a treatment plan that fits your level of disease and which organs are involved.

You may need follow up visits and repeat tests over time. Long term monitoring is a key part of care, since AAV can flare again even after a quiet period.

Treatment usually has two main phases:

1. Induction treatment to get the disease under control.
2. Maintenance treatment to keep it quiet and prevent flares.

Your exact plan will depend on how severe your AAV is and which organs are affected.

Other supportive care

• Blood pressure medicines and kidney-protective drugs
• Bone health support for people on long term steroids
• Infection prevention, such as vaccines and sometimes preventive antibiotics
• Physical and mental health support to help you stay active and cope with stress

Treatment plans are very personal. Most people with AAV are followed by a specialist team over many years. Always talk with your doctor before starting, stopping, or changing any medicine.

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