Pulmonary Fibrosis News Forums | RobJ | Activity https://pulmonaryfibrosisnews.com/forums/members/robj/activity/ Activity feed for RobJ. Thu, 23 Apr 2026 13:45:40 -0500 https://buddypress.org/?v=2.20.0 en-US 30 hourly 2 2859b27088cd42383bdd199bf23daafb RobJ replied to the discussion Tell me your questions about Jascayd (nerandomilast) in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/tell-me-your-questions-about-jascayd-nerandomilast/#post-39035 Fri, 21 Nov 2025 22:41:19 -0600 Reply to Tell me your questions about Jascayd (nerandomilast)

Did you have to try one of the other drugs first? I have not taken other drugs because of side effects .

]]> da2c92ce363d750a836666df9543701d RobJ replied to the discussion Tell me your questions about Jascayd (nerandomilast) in the forum Healthcare Questions https://pulmonaryfibrosisnews.com/forums/forums/topic/tell-me-your-questions-about-jascayd-nerandomilast/#post-39034 Fri, 21 Nov 2025 22:37:14 -0600 Reply to Tell me your questions about Jascayd (nerandomilast)

I was not aware Jascayd is available to patients. Can you let us know how we can proceed to get this drug? It would be helpful if we l knew steps to take to try for approval. Are we required to try the 2 other drugs first? Both have some side effects that have kept me from using them due to present health issues. Please share whatever you can find out.

]]> fbf50b35f52d27dedf7d14cd56c6c882 RobJ replied to the discussion Not taking antifibrosis medications in the forum Supplements and Non-traditional Management of PF https://pulmonaryfibrosisnews.com/forums/forums/topic/not-taking-antifibrosis-medications/#post-38903 Wed, 01 Oct 2025 14:49:32 -0500 Reply to Not taking antifibrosis medications

Thanks to each of you for sharing your experience, thoughts, etc. re the 2 anti fibrotic choices we currently have. The more information we gather helps us to look at real life experiences of others who have been afflicted by these horrendous lung diseases. I will have a pulmonary function test done before the end of the year to give me…

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]]> 85c20fcb33aa0d0faedad47987b587e2 RobJ replied to the discussion New drug in the forum Treatments and Science https://pulmonaryfibrosisnews.com/forums/forums/topic/new-drug-2/#post-38887 Sun, 28 Sep 2025 15:27:46 -0500 Reply to New drug

I am very interested in the nerandomilast and hopeful the FDA will complete the process and give an approval if it is safe and effective. The 2 current anti-fibrotic medications have too many potential severe side effects which has caused me to delay taking medications. I have IPF and understand in clinical trials the side effects…

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]]> 7d28e440c85c31153fc52e726eca2d21 RobJ started the discussion Not taking antifibrosis medications in the forum Supplements and Non-traditional Management of PF https://pulmonaryfibrosisnews.com/forums/forums/topic/not-taking-antifibrosis-medications/ Sun, 28 Sep 2025 15:18:55 -0500 Not taking antifibrosis medications

I would like to begin a discussion with patients who have been diagnosed with IPF. I have been diagnosed with that disease, but the side effects of the 2 available anti-fibrotic medications have led me to delay taking either medication. I would be interested in discussing your decision and if you are aware that your condition has worsened and…

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]]> 1b78d4413d2fdd74f9bc0cd8c47d4f47 RobJ replied to the discussion New drug in the forum Treatments and Science https://pulmonaryfibrosisnews.com/forums/forums/topic/new-drug-2/#post-38809 Mon, 01 Sep 2025 18:48:46 -0500 Reply to New drug

I hope you can get approval. They should grant approval to anyone in these circumstances to give hope and chances to live

]]> 41f03765b79f22cf9b05bb9ce611202a RobJ replied to the discussion OFEV Thoughts in the forum Treatments and Science https://pulmonaryfibrosisnews.com/forums/forums/topic/ofev-thoughts/#post-38808 Sat, 30 Aug 2025 16:56:00 -0500 Reply to OFEV Thoughts

Byron,

Your letter to NIH is right on target. It is well written and research cited indicates what this organization should use any and all resources to support. Those of us with IPF can take Pirfenidone or Ninetedanib but may suffer horrendous side effects , particularly if we already have serious gastro issues or liver problems. These…

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]]> 718ae5306377372b97ad27ab333f81b4 RobJ posted a new activity comment https://pulmonaryfibrosisnews.com/forums/activity/p/45800/#acomment-45820 Fri, 22 Aug 2025 14:46:45 -0500 Thank you for the welcome. I am reading as much as I can . Diagnosed with IPF January 2025. Have not taken meds due to side effects and already have issues with gastro problems unrelated to IPF. Trying to connect with others facing this obstacle. I do practice breathing techniques and try to exercise using oxygen for exertion. Hoping I can…

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In reply to - RobJ became a registered member ]]> d3c2c36c7aa8cfa40efdc7c154baf9b6 RobJ became a registered member https://pulmonaryfibrosisnews.com/forums/activity/p/45800/ Wed, 20 Aug 2025 13:37:51 -0500 2