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update on last post

Since I posted, there have been changes...first, I've spent MORE time in the hospital with pneumonia/exacerbations...and a couple months in rehab to get my strength and stamina back.  I have also seen a doc at a local teaching hospital here who thinks I do NOT have IPF, and now my pulmo is pretty sure I have NSIP, based upon clinical info and ct scans/x-rays.  That's all we have to go by - they don't want to do a lung biopsy on me due to the severity of my lung condition.  The PFT's show a major restrictive pattern, and the ct scans /x-rays show severe fibrosis, with ground glass opacities throughout. (a sign of NSIP, no?).  I'm on a 'gold standard' treatment - prednisone and immunosuppressants (Imuran, 150 mg.), but wondering if I should be on higher dosed pred (I've read that high-dose steroids work better, if pulsed).  My doc says I look better than he's seen me in a long time (as well as a couple other of my docs and my friends), so I figure he feels I'm 'plateaued' and we should just let sleeping dogs lie...i.e., don't fix what's apparently not broken.  I'm just looking toward the future, and wondering if something more down now might help things down the road?

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