• PF Communities

  Diagnosed with ILD – NSIP in 2020 Progressing faster

  Posted by Community Member on August 3, 2026 at 9:30 am

  I was diagnosed with ILD – NSIP and I have been on prednisone on and off. Mainly taking Mycophonolate 1500 mg twice a day. I was doing ok until last year when everything started going downhill. I reached out to transplant team in November but my Lung functions are down to 30% and it seems like I have to take prednisone again to calm the inflammation with in 4 months taking the 1st set of treatment. My pulmonologist suggesting me to start with Rituximab infusion after doing bronchoscopy scheduled to see if there is any infection.

  I want to understand your experience with the infusion where I have to spend 6 hours per infusion. Is this treatment painful and uncomfortable? My pulmonologist at BWH is recommended. I am 60 years old and scared now. On this side, I have a transplant team who are ready to enlist me, and my pulmonologist is suggesting this new treatment. I don’t have RA, which was confirmed. Will this destroy my body completely and affect my transplant situation?

  Any advice will be very helpful!

  Thanks

  Community Member replied 1 Member · 0 Replies

  • Immunosuppressed spotlight - Rituximab
  • Infusion Treatment
  • mycophenolate
  • NSIP
• 0 Replies

Log In to Reply