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  • Breathing Issues and Started OFEV This Week

    Posted by cherylk on July 26, 2020 at 12:55 pm

    Hello all.  I am a “newbie” to this site. I am one year post op from rt. lung CA removal and pulmonary fibrosis diagnosis.  I just got started on OFEV this week and wanted to get different people’s thoughts/observations on how this med makes you feel once the body adjusts to it.  I’ve read all kinds literature that tells me about the possible horrible side effects, but there is not a lot about how it’s supposed to make you feel.  I realize everyone is different, so just looking for general information.  I look forward to reading your thoughts/comments.

    Cheryl K.

    john-kane replied 3 years, 4 months ago 4 Members · 4 Replies
  • 4 Replies
  • Charlene Marshall

    July 26, 2020 at 7:16 pm

    Hi Cheryl,

    Welcome to the forums!

    While I wish none of us had to be here due to this cruel disease, there are a lot of wonderful people on this site! Ofev is indeed very different for many of us, but the difficulty I had with it was mostly GI. I actually had to stop the 150mg and re-introduce it to my system twice before I could tolerate it. I also find sublingual (not the tablet) Immodium to be a God send for me in terms of managing the side effects. I have to take it with food, something high in protein works best for me and I found when I first started it, I was very tired for a few weeks.

    There is lots of information on Ofev on this forum though. I’d recommend checking out this thread:https://pulmonaryfibrosisnews.com/forums/forums/topic/side-effects-of-ofev/


    Hopefully you’ll get some answers there, but do feel free to write any time 🙂
    Kind regards,

    Side effects of OFEV

  • liam-mullaney

    July 28, 2020 at 1:30 pm

    Hi Cheryl,

    I started taking Ofev back in Oct 2018 and while I have the odd GI issue, I have not thank goodness have any other side effects. I take the 150mg, one in the morning and one at night. I honestly don’t know how it has impacted my IPF progression and will probably never know but psychologically it feels like I am on something that helps me.
    I wish you well on your IPF journey.

    Best Wishes


  • cherylk

    July 28, 2020 at 1:40 pm

    Thanks to everyone who has replied to my inquiries.  As each day passes I am doing my best to adjust.  I will say that I don’t care for the underlying nausea.  I am dealing with it, but am tired of it…..

  • john-kane

    July 28, 2020 at 10:48 pm

    Hi Cheryl, I have been on 150 mg Ofev tablets since Nov 2019. My main side effect is GI and this varies by what I eat with the medicine. A salad doesn’t cut it, but protein in any form seems to minimize the distress. I also note some fatigue, although this seems to be minor yet consistent. Hope this helps.

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