My name is Carl. In March 2005, I completed my first half marathon. Little did I know that a much more challenging road lay ahead. By July, I was misdiagnosed with planter fasciitis, lyme disease and kidney stones. My symptoms worsened. A chest x-ray revealed some “abnormalities” in my lungs and a follow-up CAT scan painted a picture of my lungs that mirrored clumps of cotton candy. I later discovered that my lungs were filled with infiltrates caused by a yet undiagnosed form of vasculitis.
A much awaited appointment with a pulmonologist (lung specialist) pieced my medical puzzle together. After one look at my CAT scan results and a few questions, the pulmonologist wrote on a piece of paper the names of three diseases and recommended that we NOT go on the Internet seeking answers. Blood work returned from Yale New Haven two days later confirmed that I had two of the three – Wegener’s Granulomatosis (WG) and Goodpasture’s syndrome (GP). We had won the auto-immune rare disease daily double and we had officially entered the Twilight Zone!
The morning after my official diagnosis, I woke to the sound of my wife speaking on the phone with Dr. Peter Merkel from Boston Medical and two doctors at Hartford Hospital. She told me I needed to go to the ER because my kidneys were failing. I entered the hospital and received a triage of strong medications. I spent the next two years on a prednisone and azathioprine (an immunosuppressant) roller coaster. Finally in 2007, after a significant flare-up, I made the emotionally draining decision to enter a double blind study through Boston Medical Center to test the effectiveness of a new treatment for vasculitis patients called Rituxan. As a study patient, I received intravenous treatments of the drug once a week for four weeks in Boston. For non study patients, receipt of this drug is an insurance battle to the tune of approximately $8,000 per treatment!
Since 2007, I am thrilled to report that I have been in medicated remission. Aside from taking my “daily vitamins,” I have been able to enjoy a fairly “normal” life, with occasional doctor visits and monthly blood tests. Admittedly, when the common cold or virus inevitably creeps up, my wife and I exchange “the look” and hope in silence that there is nothing more to add to this story.
As a vasculitis patient and an advocate for the Vasculitis Foundation, I am thrilled to report that the Rituxan study consisting of 200 patients worldwide concluded in 2009. In April 2011, Rituxan became the first drug to receive FDA approval for the treatment of WG and microscopic polyangiitis (MPA).
Thank you for your support of the Vasculitis Foundation, for without it, I along with countless others, would not have access to the Awareness, Research or Support!
Published: December 2012
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