My name is Mario and I have CREST syndrome - although I know my symptoms overlap with the other form, regardless of what medical textbooks and doctors say. I was on chemotherapy (cytoxan) to break up the collagen in my lungs - could not breathe upon exertion. All this helped - my lung capacity went from 66% to 83% after chemo.
I recently re-located to southern Texas for the climate - it helps the scleroderma slow down. I had diagnosed myself on the lung involvement (collagen) but my first rheumatologist did not believe me so I insisted on lung tests. The PFT and DLCO indicated that scleroderma had indeed gone into my lungs - that was in April 1995. I knew that because I have always exercised and competed in weightlifting and ran - so I knew my lung capacity had diminished.
He did nothing - as he had done nothing with my right index finger which wound up being amputated. I then went to another doctor, Dr. Carol Beals who is on the board of directors for USF - she lives in Lansing, Michigan. She's great. I saw her in April - and then my lungs and breathing became worse. I had timed myself - I was teaching school - going from the parking lot to my room - it took me 23 seconds to recover to normal breathing. By Oct. it had gone to over 93 seconds. She didn't believe I had gotten worse so I insisted on lung test - it verified my claims.
She started me on cytoxan in Jan - a low dosage, IV over an 8 hr period. Started and ended with zofran for anti-nausea and then I requested another anti-nausea - which was an IV push - it took only minutes since the zofran took almost half an hour.
I had the treatment - once a month. The first two months were OK The third month I had nausea and fatigue. It became worse each month and then I changed from Zofran to the other _ anti-nausea. I Still felt fatigue and nausea and didn't want to eat. This would last for 5 days. My breathing capacity in Oct 1995 was 66% - by Sept 1996 the scleroderma was stopped in the lungs and my breathing capacity restored to 83%.
I was originally scheduled for 12 treatments - she also started me on penicillamine titra (low dose - 250 mgs) . Some people take as much as 1500. I know the cytoxan almost helped relieve the intensity and recovery when I experienced reflux in the middle of the night. Intensity of acidity of gastric contents was reduced by about 40% and I no longer needed 3 hours to recover before I could return to sleep - it was now reduced to about 1 hr and 15 min. I have CREST and many symptoms. I was an athlete and wrestling coach - so I still exercise just a little bit and walk up stairs as an exercise regime - but I pace myself. I try to exercise the lungs and heart - but stop short of giving myself a heart attack. I retired from teaching in cold weather - hard for me to adjust to - I loved my students and teaching. Had to move to warmer climate to slow progression of the disease.
I am 50 yrs old and am trying to start a support group in the South Padre Island, Texas area. Local newspapers were of no help so I called in the USF - that helped. I have no one here for support who has the disease - hope I can get people to my group. Thanks.
Copyright © 1997 Mario Torrez