Finding hope on my journey with ANCA-associated vasculitis

Steven Chetham runs a 5K race in Boulder, Colorado, in September 2024. (Photos courtesy of Steven Chetham)

This is Steven Chetham’s story:

I was diagnosed with granulomatosis with polyangiitis (GPA) in September 2023. Everyone’s journey with ANCA-associated vasculitis (AAV) is different, but we do have many relatable and shared experiences.

Like most of us with AAV, I was extremely healthy before my diagnosis. The disease started insidiously, seemingly out of nowhere. I didn’t understand what was physically happening to me. Initially, I dismissed the symptoms, thinking they’d go away. But as time went on, I kept getting worse, and the reality set in that something was very wrong.

In 2023, I was a physician who’d been practicing in Colorado for more than 27 years. Isolation was over from COVID-19, and I’d seen the worst of it at work. I was careful and was up to date with my COVID-19 vaccines and boosters.

In June of that year, we took a trip to Europe with friends. While there, I became ill with a cough and had pain in my right calf that made it difficult to walk. Then I started coughing up blood. I tested positive for COVID-19, and my wife, Mary, also tested positive shortly after. We cut our trip short and returned home.

Chetham and his wife Mary Nozykowski enjoy a vacation in New Hampshire.

There, I seemed to improve and eventually returned to work. However, the cough with blood returned. I saw my primary care physician, who diagnosed me with post-pulmonary COVID-19. My chest X-ray was mostly normal, but my CT scan showed “ground glass” (inflammation) and nodules in my lungs. He treated me with a short course of steroids, and I got better.

But in September 2023, my symptoms returned. I started coughing up blood again and became short of breath. My urine showed signs of microscopic blood. My oxygen saturation dropped to the 80s. I also developed hoarseness. So I was referred to a pulmonologist.

My pulmonologist suspected GPA. He tested for AAV and PR3-related AAV, which were both positive. A bronchoscopy revealed that I had subglottic tracheitis and alveolar hemorrhage (when lung air sacs are full of blood). Lab tests and the bronchoscopy confirmed my diagnosis of GPA.

I was referred to rheumatology and was started on high-dose steroids plus rituximab. After a discussion with my doctor, I also began taking Tavneos (avacopan).

I was extremely ill and on supplemental oxygen. I was weak and breathless. I was anemic from coughing up blood for months. The high-dose steroids were hard. I developed myopathy (muscle weakness) and emotional lability. I was isolated from family and friends due to the severe immunosuppression of treatment.

But I hung in there. Fortunately, because of Tavneos, I was able to wean off prednisone by the end of November. As my lungs improved, I no longer needed supplemental oxygen. I began to rehab my body by exercising, but it was difficult. I couldn’t do much at first, but I slowly started gaining strength and endurance. By March 2024, I felt significantly better and kept improving. In September 2024, I ran a 5K race in Boulder and finished in the top third for my age group!

Nozykowsi and Chetham travel to Peaks Island, Maine.

After a year of being on Tavneos, this, too, was discontinued. However, I remain on rituximab every six months. Currently, I am well and in remission. My ANCA and PR3 levels are both zero! I can work and take care of patients. My life is pretty much back to normal.

I feel fortunate. My journey was hard, but I know that others have had it harder. I’m grateful to the doctors who are treating me and for the research that has advanced the treatment of AAV. I’m grateful for the support of my family — especially Mary, who is a nurse — and for groups like the Eosinophilic and Rare Disease Cooperative and the Vasculitis Foundation, as well as others with AAV in various social media support groups.

AAV can be life-threatening. Treatment is hard, and recovery is long. At times, you think you aren’t going to make it. But from my experience, there is hope.

In recognition of Vasculitis Awareness Month in May, the ANCA Vasculitis Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by vasculitis, written in their own words. Follow us on Facebook, Instagram, and X for more stories like this, using the hashtag #ANCASpotlight, or read the full series.