My name is Bill. It was our first day on vacation in Hawaii in December 2003 when I seemed to develop “swimmer’s ear.” But over the next week my hearing got much worse. I went to a walk-in clinic in Waikiki, and was diagnosed with an ear infection and given antibiotics. Over the next few weeks, however, the hearing got worse, and the infection was hard to manage.
I developed many other problems, including numerous nosebleeds, low-gradefevers, joint pain, extreme fatigue, night sweats, loss of appetite, and weight loss. By April, I could only work a couple of hours a day. During these days, support and understanding from my wife were important as I slept up to 18 hours or more a day, at every little, was cranky, and did not participate in any family activities. It was also critical that my primary care physician (PCP) never gave up on me as I kept showing up in her office week after week with new symptoms. Then, after 4 months, a chest x-ray revealed lesions in my lung.
A lung biopsy finally gave me a diagnosis—Granulomatosis with Polyangiitis (GPA), also known as Wegener’s. I was placed on a daily regimen of prednisone and referred to Dr. Merkel. He put me on the standard drug regimens, starting with cyclophosphamide. I improved, but had continuing mild flares over the next 3 years requiring increased steroid use each time.
Then, suddenly, in May 2007, while at my Marine Corp reunion in San Diego, I lost my appetite, and developed a low-grade fever. When I returned home, I had blood in the urine,and a subsequent chest x-ray revealed bleeding in my lungs. After a stay in the intensive care unit (ICU) and several infusions of steroid, I volunteered for the Rituximab Therapy for the Induction of Remission and Tolerance in ANCA-associated Vasculitis (RAVE) trial. I went into remission and have remained that way over the last 4 years. This is my longest remission since I was diagnosed in May 2004. I recently learned that I had been in the rituximab arm of this double-blind trial.
I am proud to have been part of this historic trial, and am thrilled that rituximab is now the first Food and Drug Administration (FDA)-approved drug for the treatment of some forms of vasculitis. This approval will make it easier for our doctors to get insurance approval for all GPA patients who need this treatment in the future, including me. We are blessed to have such a talented and dedicated group of doctors around the world doing research and treating these rare diseases. And thanks to all the great volunteers who run the Vasculitis Foundation. This may be a rare disease, but you might not realize it based on this support group newsletters, Web site, medical symposiums, research support, and education for patients and doctors.
Published: May 2011
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