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Nerandomalist.
Hi : I found a few comments regarding the final results and in my opinion, it is as good as ofev but with less side effects. It keeps fvc a bit better, but we would only know after a few years.
https://www.thepharmaletter.com/pharmaceutical/boehringer-modest-benefit
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4 Replies
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Sorry to rain on the parade but my results with FIBRONEER PPF trial of Nerandomilast/ BI 1015550 have not been good. Not because of gastric problems which I can handle, but because over the course of the clinical trial when the average decline in Fvc was “only” 98ml, My decline was a disastrous 286ml. much worse than average placebo response. I was on the full 18mg dose during the trial and now the extension. This was after 5 years of only modest decline on Ofev and Mycophenolate. I also developed ugly purple bruising of my hands and forearms. And a new allergy to wheat. Has anyone else had this terrible drug response or side effects?
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Briano – did you stay on OFEV during the trial and after. I’m asking if you did both?
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Yes I have been on ofev continuously since June 2022.
Also Mycophenolate since Nov 2022 with pauses
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Thank you for the additional information. I’m so sorry to hear this news and that it doesn’t appear to be helping you.
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