I was wondering if anyone could comment on the speed of the progression of their systemic sclerosis.... particularly if you have lung involvement.
I ask because I was just diagnosed in July of this year and the progresion has been much faster than anything I can find on any website.
When I first saw a pulmonologist (back on May 3, 2012), I just assumed that I had exercised induced asthma as my exercise tolerance went down very fast but I was fine at rest. As a matter of fact, in january (5 months before I saw the pulmonologist) I was running 5 miles a day and biking about 30 miles a day, and now am wearing oxygen 24/7 and still having shortness of breath.
My initial DLCO was 35% and is now down to 20% and when I did my first 6 minute walk test, I was a little short of breath but did okay, and when I did it the other day, the distance was less, I was on 6L of oxygen and my oxygen level still dropped and stayed at 80%.
I did just complete a lung transplant evaluation at Columbia in NYC and they said that I meet all of the requirements with the exception of my required assistance with activities of daily living, as I am still working full time.
So, any information you can provide would be very helpful so I can put this in perspective.
Just for completions sake, I am currently taking Cellcept 500mg (3 Pills), twice a day, prednisone 10mg/day, and Bactrim DS three times per week.
Thanks again andI look forward to reading the responses!!!