hi everyone.
i was diagnosed with scleroderma in march 2025. my disease quickly progressed and i was put on cellcept in october 2025. unfortunately, my body could not handle that medication and i was switched to myfortic in january (which i’ve tolerated excellently).
a few months ago i did PFTs and CT scans which came back as severe lung diffusion and early ILD, respectively.
i saw my rhuem yesterday, very hopeful, because i’ve seen changes in my skin. however, she did not feel the progress was enough, and now that my lungs are involved, wants to get “more aggressive.”
i met with the clinical director and my rhuem, and they expressed wanting me to join a clinical study. i am open to this, but i’ve only been able to find information on this medication and sjogrens.
does anyone have experience with this trial? i need to make my decision this week, so any advice or guidance is appreciated.
thank you. <3