outlook on systemic scleroderma, my thoughts
im on rituximab, cellcept + plaquenil, no side effects but there seems to be a ton of side effects listed for these meds and i have no symptoms other than raynauds and some skin thickening on my hands and arms. its been a 2 years now since being diagnosed(high ANA level+very high anti-Scl 70 ) and nothing has changed much. im only 21 and feel like im cursed because there is no permanent fix but ive heard about car-t cell therapy and the possibility in the far future for it to work... but i think about now, and now im in college and cant drink, smoke or anything and all my friends in college can go out and have fun while im worried im going to get sick from just going to lecture or fratting because i have 0 B-cells and my fingers will turn purple the moment it gets a little bit cold... just feel like im missing out on the college experience and cant do anything about it. i feel like im ungrateful because i have very few symptoms, but i just want to live a normal life. i hate going to the hospital and getting my blood drawn every time and especially sitting in a room for 6 hours to get rituximab or getting all the possible CT scans and MRIs. ive been tested for lung function multiple times and gotten an EKG twice now. i take amlodipine(dont feel a big difference) in the winter for my hands but it makes me more fatigued easily and i hate it because i love weightlifting and it makes it so much harder. things still feel uncertain and im just looking for a more positive outlook, especially because in my future line of work i will be doing a great amount of precision work with my hands in a cold environment, which is basically the worst type of job for my diagnosis