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Ofev – diarrhea after some time?
Dear All, I have a question if you started suffering from diarrhea soon after starting Ofev or after some time? My Dad takes it since January and just now the side effect occured. We are wondering if it could be just a virus, because ealier he was compeletly fine. We also thought the Ofev does not work on him.
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10 Replies
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I started on OFEV nearly 5 years ago. For the first 4 to 5 months everything was fine, then I started having diarrhea and it hasn’t let up since. Sorry to be the bearer of bad news. However, not everyone reacts the same way, so perhaps it will abate soon.
Phil
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I’ve been on Ofev for 6 months now and have only experienced constipation that I’ve kept under control. Recently, when the dose was increased to 150mg, I started to get occasional diarrhea, but so far only when I’ve eaten something that was problematic in some way. I worry a little that I need to be more careful with what I eat. (don’t go overboard with wacky smoothie ingredients and go easier on the ghost peppers…) Hopefully, I will avoid any future problems but even if I do – I’d rather put up with diarrhea for a time with the hope that it will eventually subside. I’d rather not take Esberiet.
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May I ask what made you think Ofev is not working for him? Are his test results (PFT, HRCT) worse than before taking Ofev?
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I started on ofev in July, 2023, by February, 2024 the diarrhea was so bad that Loparamide and diet weren’t helping. Cut back to 1x 150/day and guts settled down.
In June, 2024 went to 100mg x twice daily and within a month was back to the diarrhea so bad that experienced fecal incontinence while asleep in the middle of the night. Pulmonologist has applied to switch me to esbriet so have not been on meds for 2 weeks and guts are almost normal. Time will tell. Everyone’s body reacts differently and there is no set path for all.
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I tried Ofev but almost immediately had diarrhea that was uncontrollable and stopped but I want to try it again lower dose so I can slow this disease some.
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Diagnosed IPF in October 23. On Ofev 150mg x2, I had severe diarrhea every day and one time 9 times in a day. I tried the raisin bread,Carob and Imodium twice a day. Nothing came close to helping. Around the middle of June I asked my Doctor to put me on 100 mg instead of the 150mg. She did, and within a week I have had normal GI functions. YEA!!!. I had my third CT Scan several weeks ago and had no increase in scaring. I intend to stay on the 100mg up to my next CT Scan. If the results are not good, I will go back to the 150mg dose and live with the problem. They did find a nodal on my right lung increased in size some and I go for a PET Scan tomorrow. Prayers accepted. Things have been so good for me on the 100mg.
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After starting on Ofev 150mg tablets twice daily I went for about three months without any side effects. Then weight loss and diarrhoea set in. While the initial onslaught was a little disturbing, over the last three years it been little more than a nuisance that is quickly controlled with a couple of loperamide tablets.
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I was on Ofev for about 6 months and bounced between diarrhea and constipation constantly. I mostly daily used Miralax for the constipation and Metamucil for the diarrhea (sounds strange, but that’s the way it works with me) and other stronger laxatives and anta-diarrheals as needed. The Ofev appeared to improve my lungs as seen in CT scan and breathing tests, but I periodically experienced excruciating abdominal pain that would last and leave me incapacitated continuously for 2 to 3 days. 6 months ago the doc switched me to Perfinidone/Esbreit. That too causes diarrhea and constipation, but not as severe and easier to control. Unfortunately, it does not appear to work as well as the Ofev and I may have to go back on Ofev.
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Julian
I suffered with Ofev-induced diarrhea for over three years before my new pulmonology PA suggested that I take 2 mg loperamide and 10 mg famotidine before breakfast and dinner. Since starting that regimen, I haven’t had diarrhea all year. It has made a big improvement in my quality of life.
Walter
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I started out on Ofev 150mg 2x in July of 2023. No diarrhea for the first 10 months no matter what I ate as long as there was some protein. Then it started in June once or twice a week no matter what I ate. Loperamide clears it right up. Still trying to zero in on what is triggering it. Thought it might be dairy, hot peppers, tomatoes, or spicy food since I had an episode after each. But it doesn’t happen every time so still haven’t hit it. Maybe I just need more protein.
I also noticed some stomach discomfort around lunch time if I don’t eat anything. Don’t always have an appetite but even crackers helps.
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