In late summer of 1992, Dan Prozialeck began experiencing chronic congestion, coughing and sinus infections, throat pain, and excruciating joint pain. He had been going to a local urgent care facility for months for the sinus infections and each time he saw the doctor, he was put on a stronger antibiotic and increasing amounts of prednisone. On January 30, 1993, a new symptom emerged – hemoptysis (airway bleeding) – and on January 31, Dan returned to the doctor for yet another sinus infection and was subsequently put on a different antibiotic and more prednisone. He had such joint pain that he couldn’t walk. “As my wife was pushing me out of the facility in an office chair (no wheelchairs were available), the doctor called out and said, ‘Wait, you can’t go home. You have to go to the hospital.’”
Dan spent the next 23 days in the hospital, eventually winding up in the intensive care unit because the oxygen levels in his blood had plummeted. He also had blood in his urine. After undergoing numerous tests including lung, sinus and nasal biopsies, CT scans, MRIs, and bronchoscopies, a kidney biopsy was performed on day 20 of his hospital stay. “The cell structure for granulomatosis with polyangiitis (GPA/formerly Wegener’s granulomatosis) was found with that biopsy,” Dan explained. “On day 21 they started me on Cytoxan® (cyclophosphamide) and more prednisone, and on day 23, I was discharged and sent home. My urine had cleared, and my other symptoms abated.”
Dan’s treatment regimen included Cytoxan and prednisone for a 33-month period, along with a myriad of other medications. Unfortunately, the course of Cytoxan resulted in a bladder cancer diagnosis, which resulted in a radical cystectomy in December 2002 and Dan now having to wear a urostomy pouch. “We tried methotrexate, but I had an allergic reaction to that drug,” he said. “We then tried Imuran (azathioprine) and that proved to be effective for many years.” Currently, Dan is undergoing rituximab infusions about every 10 months.
Happy to report that he is currently in remission, Dan’s last relapse was in July 2022. It was a relatively mild relapse that resolved quickly, with a 30-day course of prednisone. “Vasculitis has made me more aware of my surroundings and that life is precious and fleeting,” he said. He has tried to maintain a normal existence as possible, doing household chores, mowing the lawn in the summer, planting and tending to his garden, cleaning up leaves in the fall and clearing the driveway in the winter. “It hasn’t slowed me down,” he said. Dan is 72 years old now and lives in Marysville, Ohio. He has been married for 47 years (this May) to his wife, Jean. They have three children: Joshua, a physician, Nicole, a nurse, and Jordan, a PharmD.
Dan feels that the Vasculitis Foundation (VF) has helped him get to where he is today. At the time of his diagnosis, the VF was called the Wegener’s Granulomatosis Support Group, which led Dan to Gary Hoffman, MD, at the Cleveland Clinic. “The man who saved my life,” Dan said. “Dr. Hoffman had come to the clinic just as I was spiraling downward. He got me off Cytoxan and started me on a new treatment regimen.” Ultimately, Dr. Hoffman got Dan into a rituximab drug trial and as Dan said, “the rest is history.” He and his family had used what is now the VF many times over the years to get answers to their questions.
Within a week of receiving rituximab during the trial, Dan’s symptoms had cleared, and he felt 100% better. “I continue to get infusions—the most recent one was on January 4, 2023.”
“You have to have a positive attitude to beat GPA,” Dan said. “My wife, Jean, a retired RN, was an integral part of my fight against GPA. She kept me in line and made me more conscious of the issues around me.” Dan describes her as a fanatic when it comes to hygiene such as hand washing, using hand sanitizers and making sure if something came up, he would call his physician.
Dan’s advice for others facing a similar diagnosis is to remain positive. “You can beat this. Ask your doctor questions and be cautious about your surroundings,” he said.
Author: Nina Silberstein