Tony B: Systemic Scleroderma

My name is Tony and I was diagnosed with scleroderma in September of 2000, but I had the symptoms for three years before that. I am sure I do not have to tell any of you what it felt like to be told I had scleroderma and a poor prognosis. It has taken me some time to come to terms with this disease. The SCLERO.ORG Web site and the support of others who have scleroderma has helped me tremendously.

When I was diagnosed with scleroderma through blood work, I was sent to a local rheumatologist who started me on prednisone and penicillamine with a 'wait and see' attitude.

I live one hour from the Cleveland Clinic in Ohio, which is one of the best clinics in the country. I found a good rheumatologist who dove right into the problem by scheduling breathing tests, lung scans, heart tests and complete blood work. After I went back for the test results I found out I had Raynaud's (which I already knew), pulmonary fibrosis and pulmonary hypertension. About thirty percent of my lungs had scar tissue so I was put on cytoxan (a chemotherapy pill) and an antibiotic to go with it to stop the lungs from scarring more. He also doubled my prednisone and penicillamine, and started me on a blood pressure pill (for Raynaud's) and aspirin. After I was on the cytoxan for about a year, I had another lung scan which showed that the scarring had stopped. I was slowly weaned off the prednisone after a year and a half.

Today I am doing better than two years ago and I am pretty much stable on my medications. I am limited with what I can do because of the scarring of my lungs and the shortness of breath. I still have a lot of pain throughout my body, with more severe pain in my fingers and hands, and all the rest that goes along with scleroderma.