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IPF Symptoms When Using Pirfenidone

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hugh71613
hugh71613

I'm getting mixed messages about change in IPF symptoms such as shortness of breath, coughing and fatigue after a person starts using Pirfenidone.  Some articles say that there is little to no change in these symptoms.  However there a few interviews on the web where people say they have experienced improvement in symptoms when using Pirfenidone.  I was wondering if some of you who have been on the drug for some time could comment?  Thanks!

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3 Replies

  • neville93106
    neville93106 hugh71613

    Posted

    Slowly but steadily over four years things have got worse, and I am now very short of breath and on oxygen. But the rate of progress if the disease has been much slower than without the drug.
  • veronica62905
    veronica62905 hugh71613

    Posted

    My partner was on Pirfenidone (esbiet) she was on 9 pills a day. There are a number of side effects, she had tiredness, headache, dizziness, nausea, stomach  upset, heartburn, sensitivity to sunlight, cold symptoms (stuffy or runny nose, sore throat, sneezing), sleep problems (insomnia), The runny nose soon became pnemonia & very short of breathe. She stoppped after speaking to her doctor, which stated that this drug could shorten your lung capacity. Since recovering from the pnemonia, she has not recovered the lung capacity. She is now on 5 lp and anytime she has any exhertion her pulse ox goes down to sometimes in the 60's, this is most of time just walking. I am hoping she will recover & praying.

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