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In 1995, I was diagnosed with stage four Non-Hodgkin’s Lymphoma. I went through six rounds of chemotherapy. A few years later I started having issues with my eyes, a rash on my skin and joint pain. In 2000, I was diagnosed with Granulomatosis w/Polyangiitis (GPA). I spent three years on a low dose of Cytoxan and lots of prednisone. Then I had kidney involvement, which lead to being treated with Rituxan. I have had eight treatments of Rituxan over the past fourteen years with no side effects. I am convinced this drug has kept me alive and able to live a fairly normal life. – CT
I have Churg-Strauss (EPGA) Vasculitis. My original symptoms were sinus problems, a bad cough and lung congestion. For three years I was prescribed Prednisone and antibiotics for “Pneumonia.” Every time I went off the medication my symptoms came back. I started searching on my own to find more information about my symptoms and that’s when I learned about Chrug-Strauss Vasculitis. I went to my doctor and told him that I thought I had this disease and after running various tests, sure enough that was my diagnosis. I still have severe fatigue, however, I have found Rituxan to be an effective medication for me. – SH
I have had Granulomatosis w/Polyangiitis (GPA) since 2000. When I was diagnosed they gave me 5 years to live. As you can imagine, everyday is precious to me. I now spend as much time as I can with my children and grandchildren. I have had good doctors that are proactive on new treatments for vasculitis patients and I am thankful for that. – JH
My symptoms started with extreme fatigue, pneumonia, extreme leg pain, chest pains and sinusitis for the first 10 years. In 2009, I was in renal failure, coughing up blood and my lungs were filling with blood. I was in intensive care for two weeks. At that time I was diagnosed with Microscopic Polyangiitis (MPA). My treatment was prednisone, chemotherapy and immunosuppresive drugs. Since 2011, I have been in remission. – KS
In June 2017 I had severe abdominal pain. Being a nurse, by the end of the day, I knew something was wrong and I drove myself to the hospital. Several tests were done and it was determined I should have exploratory surgery. They found my portal artery to my liver was ruptured in 3 places. 5 surgeons saved my life that day. After further testing, an angiogram confirmed a diagnosis of Polyarteritis Nodosa (PAN) which affects medium sized blood vessels. My treatment has been high doses of steroids, chemotherapy and immunosuppressive drugs. My medications have since been reduced and I am doing better. Vasculitis is a lonely and isolating disease. I have found it is important for me to have someone help me to find resources and support where people have an understanding of vasculitis. BHVC has been a great resource for me. – JM