• Posted by mack on November 15, 2023 at 2:30 pm

    I have been on100 does of Ofev twice a day since May 2021. I have had no couch or shortness of breath until about 30 days ago. My shortness of breath seems to be getting a little worse each day and my couch has come back. My doctor wants to raise my Ofev to 150 twice a day. Has anyone experienced anything like this before and did the 150 does help ?



    jpp replied 1 day, 17 hours ago 4 Members · 4 Replies
  • 4 Replies
  • paul-b-lakeland

    November 16, 2023 at 2:22 pm

    Hey Mack,

    I’ve been on 150mg twice / day for 2.5 years.

    No major problems, mostly diarrheal issues, which can be managed with diet.

    Just saw pulmonologist today, she said my lungs are damaged but stable.

    Good luck. Paul B

    😖 🍌🍞 😉

    • frog

      November 16, 2023 at 6:00 pm

      I took 150 for over 6 months and had diarrhea since I take 100 and don’t have diarrhea that bad. For cough I take 400 mg Guaifenesin twice a day and it really helps

  • mack

    November 16, 2023 at 2:51 pm

    Thanks for your reply !

  • jpp

    November 30, 2023 at 3:46 pm

    I was diagnosed in March of this year with IPF after coming down with Pneumonia. I had to switch doctors because the first one only wanted to run test after test trying to make money off my insurance. The second doctor was very good. He prescribed Ofev 150 mg. At first, I was experiencing a slight case of Diarrhea and he wanted to reduce my dosage to 100mg but I told him I didn’t want to do that so he prescribed Loperamide for diarrhea which I take occasionally and it works fine. In addition to Ofev, I take Zinc and several vitamins to boost my immune system. I’m also taking a controversial drug called Fenbendazole. It was taken by a cancer patient who’s cancer went into remission and a number of IPF patients are trying it. I don’t know if it will help but at 77 years old I’m willing to try it.

    My doctor put me in contact with a group called “Open Doors” and I’m getting my Ofev from them. They will charge you anywhere from 0 up according to your income. I will go back in January to have another breathing test done, hopefully, it will result in a good diagnosis. Good luck!

Log in to reply.