Hi all! I'm relatively new to the site but unfortunately not to scleroderma. I have been checking in on topics discussed and even been on to chat a few times. Finally, I decided to share my story in short on here so that I could get some ideas/opinions.
I'm 30 years old now and I was originally diagnosed with limited systemic scleroderma in March of '05. I lived mostly with some thickened skin on my hands and fingers and frequent Raynaud's attacks. I was also getting regular ulcers on my fingers and experiencing mild heartburn.
This past November I called my rheumatologist that I had not seen in almost 2 years after noticing a drastic change in my lung function over just 6-9 months. She ordered a PFT and echo to be done before my visit with her. We found that my basic lung funtion is at about 35%. My diagnosis was officially "upgraded" to diffuse systemic sclerosis in December of '08.
In January I began receiving monthly IV Cytoxan and will conclude that treatment in June. I know everyone responds to this differently, but I have had what I would consider a pretty good experience with Cytoxan. Now, I don't know that it's done anything significant to help yet, but I have tolerated the drug very well. Never really getting nauseated, thanks to drugs and not even losing my hair (although it's thinned).
After much research and talking with a physician at Duke University (which is also where my brother happens to work), my family and I feel I haven't a lot of good options for slowing lung progression and improving my quality of life. At this point I am still able to do most of the things I love, although it's more challenging to go shopping or to sporting events and things where I have to walk a lot or climb stairs. I feel looking into my options for a stem cell transplant is a good choice. I know I do not qualify for the SCOT study because of my lung function, but I have contacted the study being conducted at Northwestern and they seem to think they may be able to help me. My mother and I will be driving the 6 hours next week for an evaluation.
I just want to give myself the opportunity to be as well as I can for as long as I can. So, I guess my point in writing is to ask what would be your thoughts or ideas about treatments. What has worked for you? What have you seen that looks promising? Anything helps.