Pulmonary Fibrosis News Forums | Ellen | Activity https://pulmonaryfibrosisnews.com/forums/members/elle2021/activity/ Activity feed for Ellen. Sun, 19 Apr 2026 22:30:47 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 28e3142417d1d2abb252b000f35e5201 Ellen replied to the discussion Painful side effects? in the forum Esbriet (Pirfenidone) https://pulmonaryfibrosisnews.com/forums/forums/topic/painful-side-effects/#post-31985 Sat, 07 May 2022 12:45:17 -0500 Reply to Painful side effects?

I experienced similar pain, around the bellybutton area & right, this was what I thought coming from the liver. I also was confused & very tired, could not hardly get to bathroom, stayed constipated & severe nausea. I was dehydrated & no appetite. My daughter came in one night after work & had a difficult time waking me up. Did I say I lost… Read more

]]> bfc6f6b3ad68c8042f276f901302e172 Ellen replied to the discussion Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts https://pulmonaryfibrosisnews.com/forums/forums/topic/nearly-40-of-ipf-patinets-in-the-us-not-prescribed-esbriet-or-ofev-despite-effectiveness-study-reports/#post-31622 Fri, 08 Apr 2022 01:35:50 -0500 Reply to Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports

Jill, do your research. Doctors nowadays want to put us in one category or another. 30 y of nursing never prepared me for this event in my life. My Gene’s from my mother (Scleroderma) is an autoimmune disease. These diseases play havoc with all of your internal organs. ie. heart, pancreas, lungs & now 2nd to OFEV my kidneys, I ended up in a… Read more

]]> ebcff5c0642d201c1b372e928c237408 Ellen replied to the discussion Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts https://pulmonaryfibrosisnews.com/forums/forums/topic/nearly-40-of-ipf-patinets-in-the-us-not-prescribed-esbriet-or-ofev-despite-effectiveness-study-reports/#post-31620 Fri, 08 Apr 2022 01:21:24 -0500 Reply to Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports

Hello to all of you Pf/IPF individuals out there. My pulmonary doc  mentioned & prescribed OFEV for me in November after lung biopsy in October. I was mentally prepared for whatever side effects came. I will say, I could have dealt with the diarrhea, & a little nausea. However, I was not prepared for the see-saw effect of BP & sugar. I had… Read more

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