Hi! I was diagnosed with lupus pneumonitis back in 2002 after being diagnosed with asthma and respiratory failure. Every cold that my son brings home leads to a hospitalization; last year I was on a vent in ICU for 6 days- no infection, just pneumonitis. This year I was on a vent for 5 days but I had massive pneumonia. And just last month I was in the hospital with bilateral pneumonia in the bases but didn't need to be ventilated.
My pulmonologist isn't sure of the origins of the pneumonitis- I was on methotrexate for years and it can cause pneumonitis. Pneumonitis is diagnosed by bronchoscopy with a biopsy taken. I am very short of breath, but my pulse oximetry levels run 92-95%, which is just above the criteria for home O2. Meanwhile, I can't walk long distances (or short ones) without getting very short of breath, which means no family outings where I may have to walk far. Which I hate because I used to work out 5 days a week and walked everywhere. Now I get short of breath just going up the steps to the second floor of our house.
My pneumonitis always seems to start with asthma symptoms- using my inhaler, then home nebulizers, then ER.
I hope you don't have this rare complication of lupus; it's not anything I would wish on my worst enemy!
Good luck! Sandy