Wegener's granulomatosis-Weight Gain-Survival

HeatherLynnNC77

Here goes...I have (WG), more recently granulomatosis with polyangiitis (Wegener's) (GPA) After Chemo infusions, MethlyPred, Cortisone and current daily oral pred...I weigh the most I've ever weighed my entire life, even when I had both my girls! 40 pound gain in just under 3 months. I am grateful to be alive bc before steroid treatment became available, mortality within one year was over 90%, with average survival being 5 months. Steroids prolonged average survival to 8 months. The introduction of cyclophosphamide (CYC) in the 1970s was a major breakthrough. Five-year survival is now 87%.So if I do the math 40 pounds=Staying alive I choose living of course.... but being a woman I worry about my appearance.

mnfrank11

I was just recently diagnosed with WG myself so I completely understand. I started my first round of steroids this past week and have been avoiding carbs to not gain weight. Any recommendations? I'm so glad just as yourself for modern medicine. Please feel free to add me! Best wishes!