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OFEV
My shortness of breath started within 10 weeks of my heart attack in 2019. I was diagnosed with IPF on October 2022 (FVC 62%).
I was on OFEV for 8 weeks but couldn’t continue due to (diarrhea, loss of appetite). In October 2023, my FVC drop to 57% (5% declined ).
I started OFEV in November 2022 and diarrhea side effects is manageable with 1 leparomide (2 mg) in the morning.
In April 2023, my FVC dropped to 50% which is 7% declined in 7 months.
For me, it looks I was better off without OFEV though doctor said that every person is different and FVC declined is no linear.
Does anyone can share their experiences regarding OFEV.
Should I continue or stop OFEV as it still have loss of appetite side effect.
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2 Replies
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I have been on Ofev since 2020. I have had severe diarrhea while being on the Ofev 150. I was taking 6 Imodium to try to control it and lost about 30 pounds. 2023 was the best I felt since 2020 (no flare-ups). January 2024 they encouraged me to try the Ofev 100 (to try to control the diarrhea) but my cough got worse. My Pulmonologist told me that the 7.5 mg of daily prednisone that I was on controls the cough…not the Ofev. She said Ofev was for the scarring. I didn’t agree with her because my previous Pulmonogist put me on Ofev 100 for a while and again…my cough got worse. I pushed back and asked to be put back on the Ofev 150 and after more prednisone to get over the flare-up I feel like I’m back on track. I feel more like myself. Now, I’m now taking 5 imodium to control the diarrhea, but so far I can eat anything that I want and have gained weight that I have been able to maintain. Just remember everyone is different and what works for one person may not work for another. Good luck!
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Hi Syed,
Thanks for your post. There’s a lot of information and patient experiences on the forum regarding Ofev, including dosage, side effects etc. If you wanted to use the search function on the right-hand side of the home screen, and just type in “Ofev”, you’ll see a drop down list of a number of different conversations appear. Hopefully you’ll find what you’re looking for.
Take care,
Charlene.
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