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Ellen

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@elle2021

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    Ellen replied to the topic Painful side effects? in the forum Esbriet (Pirfenidone) 1 month, 2 weeks ago

    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 15…[Read more]

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    Ellen replied to the topic Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts 2 months, 2 weeks ago

    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 renal…[Read more]

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    Ellen replied to the topic Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts 2 months, 2 weeks ago

    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 severe…[Read more]

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    Ellen became a registered member 3 months, 2 weeks ago

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      Christie Patient replied 3 months, 2 weeks ago

      Welcome to the forum community Ellen, we’re glad you found us!

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