@itat

I have systemic sclerosis with skin, joints (inflammatory arthritis) and GI (IBS) involvement. It is multi-system involvement, possibly not only scleroderma. Lungs scarring or ILD was present but low when I went into the transplant. Standard treatments, like Methotrexate followed by Cellcept did not stop progression. Actemra was working but produced difficult GI toxicities. Some people with ILD may do well on Actemra, if tolerated long-term. I saw some skin reversal and less joints inflammation after 5 months on treatment.

I was fully functional and independent before the transplant. It was autologous stem cell transplant for Scleroderma (done at Duke). The expectations from the transplant were that at a minimum it should stop disease progression. However, Raynaud, vasculitis, inflammation, lung, skin and joints kept progressing post-transplant. Additional post-transplant symptoms - neuropathy and muscle weakness with chronic fatigue. I was off all medications for 14 months post-transplant, as required to restore bone marrow. Rapid disease progression started at around 12 months off meds. Unfortunately, the transplant did not work but produced extreme long-term fatigue and other complications post high dose chemo, radiation and high dose steroids, that were a part of the conditioning regimen. I was in a much better shape before the transplant. May need to be careful with high-risk treatment choices, as those do not always work, but may take you off other treatments.
I hope new treatments and medications in clinical trials may be a better option. Of course, possible toxicities to be considered.
Now I am going back to standard therapies for scleroderma until something new gets approved. Hope, this helps.