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  • Author
    • #33079
      Rob1ert Henderson

      3 months on ofev.  Food tastes bad, no appetite.  Have lost 20lbs.  Extreme fatigue.  Is this due to ofev or IPF?

    • #33165

      My mom has had IPF for about 7 yrs progressively and recently dramatic weight loss. She takes Esbriet, ( she has taken full dose)I’ve always been suspicious of it’s side effects, especially with appetite. However, as IPF progresses her pulmonologist said her metabolism is much faster because her oxygen demand and how this effects her bodies needs. Thus burns calories at a much higher rate causing weight loss. Soon after diagnosis and taking this med she has had an increased distaste for things she used to like to eat and fatigue even worse than the shortness of breath. Take care, and seek out resources to get the assistance you need!

      • #33167
        Rob1ert Henderson

        Sounds like Esbriet has similar side effects.  Has anyone tried reducing the dosage?

        bob henderson

    • #33180
      Joan Thorkelson

      I had the same problem. After 8 months and 25 lb. loss, I stopped taking OFEV. I am still on Esbriet and so far so good with oxygen levels.

    • #33188
      Bruce F.

      Hi everyone—I am new to the illness, the medicine, and to this group.  I am working hard to manage appropriate food intake while on OFEV.

      I hope there is an active discussion board about nutrition here; I will look and report back to this thread!

      Best wishes to all of you!

    • #33219
      Malcolm Mann

      My appetite diminished on both antifibrotics, and worryingly the things I should be eating appeal less to me now,  ie vegetables & salads.

      My weight loss now has plateaued.

      Things I once relished are now unattractive, frinstance, I used to have a big breakfast most days, eggs bacon & trimmings, just the smell of this now revolts me.

      My food intolerance seems to be worse in the morning, where any breakfast is a real challenge. I liken this to male morning sickness.

      When we go out my wife & I often share a meal, it’s all we need.

      The only positive in this sad tale is that now I now have reached a normal BMI.


      Mal in sunny Tasmania

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