I was diagnosed with ILD associated with primary Sjogrens Disease in October 2025. My PCP referred me to Mayo Rochester pulmonology after I had sudden onset of shortness of breathe and cough following a bad flare of Sjogrens. Very hypoxic, Extreme joint pain and Fatigue, rapid weight loss. My ILD at initial Dx is severe for diffusing capacity so I’m on O2 for any exertion and sleep. Was able to get respiratory vaccines done before starting rituximab in Dec. Down to last week of tapering down prednisone and hopeful that the rituximab will prevent further lung damage.

I’ve been isolating at home during this winter flu etc season. I used to be 67 going on 57, now feel like 68 going on 88! Anyone on here treat CTD-ILD w rituximab? Any helpful tips on managing severe ILD with pulmonary rehab? I’m doing well with my portable O2 and keeping my pulse O2 reading around 95 but would like to slowly increase activity. Have exercised and been very active lifelong. This is tough.
Thank you!