Good Morning and Happy Christmas all,
I have sle and ashtma and am often in a spiral of acute sob and neuro symptom flares. I had a good discussion with my rheumy that I believe in quality of life vs length and agree that one step at a time and pulmonary rehab are good ways to go. I am often surprised that my pf function tests aren't better. My gold standard is ........if I can TALK, I can breathe Weight loss and better nutrition are two of my ongoing goals. I live getting by when my prednisone gets weaned down to 5mg a day, and feel wonderful and energized without joint pain or neuro symptoms when I am taking 40mg. My high doses are reserved for when I am sick enough to go to the hospital. It's the respiratory infections that do me in. My bone density con't to drop, so we are trying to ward off osteoporosis from the chronic prednisone use. I have lost 29 pounds even with prednisone, but did it the hard way being sick. I am a strong believer in the benefit of good, balanced, nutrition and try to limit calories. It is tough being a carboholic, for sure.