300mg Ofev for 3 absolutely miserable years. Started Jascayd and ALL the bathroom issues are GONE.

Go to Behringer Ingelheim and inquire about the OPEN DOORS Patient Support Program. They quickly set me up at no cost….at least for now. You will need to have your Doctor assist you as well

I wonder how many folks that are on Jascayd are taking OFEV as well. I am on Jascayd 18 mg twice daily and stopped my OFEV 300mg the day I started Jascayd-Oct. 18. I had seen some test results that indicated a very slight increased benefit in taking Jascayd only. Now I am not so sure. Seeing my expert pulmanologist tomorrow and am wondering if…

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Spoiler Alert! I am on Jascayd (Nerandomilast) now and the OFEV is
history.!! Male age 76 Mild
emphysema and mild fibrosis discovered just before Covid 19 began. I
also found out that I have an upper thoracic aneurysm and THAT scared me
silly! I was afraid to go to a doctors office during Covid with these
serious issues.…

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I have Dupytren’s Contracture as well as PF and Emphysema. Interesting thought you have concerning this. I trust that a knowledgeable researcher has looked into this. John Elway has a bad case of this and may be a spokesman for Xiaflex.

Spoiler Alert! I am on Jascayd (Nerandomilast) now and the OFEV is history.!! Male age 76–My time frame is similar to yours. Mild emphysema and mild fibrosis discovered just before Covid 19 began. I also found out that I have an upper thoracic aneurysm and THAT scared me silly! I was afraid to go to a doctors office during Covid with…

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I read that taking the new drug and discontinuing OFEV had better results than taking both at the same time. Don’t quote me but I think that the mortality rate was reduced by 59% as opposed to 41% in groups taking both. I know that is VERY vague but that was the general gist of the article….

On OFEV 300 daily for 3 years now. Diarrhea was us occurring up to 6 times daily. Cinammon raisin bread helped and after a 6 month period was no longer helpful. I take 200 mg of Ibuprofen nightly to ease joint pain. I have a serious knee issue and doc started me on a mega dose 2400 mg daily. Way too much and got a rash. Now I am taking at…

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I just found the link. Please disregard. Cannot delete this question.

I saw a link in one of the Post Transplant stories that was posted in just the past few weeks – April 2024. I saved it to favorites but of course it disappeared! It was a lengthy article and I got about halfway through it when I had to take care of something. I have looked and I am unable to find it. It was one person’s experience that…

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Your husband rides a bike 15 to 20 miles several times a week at 80! Wow…I cannot walk 70 feet without being tired. One flight of stairs taken VERY slowly and oxygen level drops to 90. Sounds like he is in great shape.

Not toasted! Just right out of the bag. May try it toasted but afraid to vary from something that is so easy and WORKS.

I do not add butter. Let me remind everyone that Pepperidge Farm Raisin bread is FAR more effective and much tastier than the other brands that I tried. It is more moist and dense than typical raisin bread. Still working very well for me with OFEV 300mg per day. I take one daily stool softener along with several of the Costco Kirkland…

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Pepperidge Farm raisin bread is by far the tastiest and effective brand i preventing bathroom nightmares. I ran out of it and used other brands that were not nearly as effective. Back on it now and I am now at around 5 weeks without incident. Had spicy food for lunch one day….big mistake the next day. I also take one stool softener daily as…

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I have been on OFEV 300mg daily for 2 1/2 years. I have had a real problem with frequent bathroom visits until two weeks ago. I ate several slices of Raisin Bread with cinnamon one evening for a big snack and my problem vanished. I continue to eat at least 5 slices every evening and I do not need imodium at all. It is amazing! It works for me…

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Hey Chris I have been on OFEV total of 300 mg daily for 2 years. 2 pills daily – each 12 hours apart. I have no idea if my PF and Emphysema have been helped. I was diagnosed 4 years ago and both conditions were mild. CT scan 3 years ago was about the same. I was able to walk around a 17 acre park most of the way before my oxygen dropped to… Read more

I started taking Zinc but have not spoken with my Doc yet. I will inquire on a Zoom visit with him the first week of September.

Male age 74. Diagnosed 4 years ago mild PF and mild emphysema. Covid hit and I was afraid to see a doctor. 2 years later got vaccinated and started OFEV. 2 X 150 mg per day. Initially was pretty rough. Discovered Immodium and began taking 1/2 most days or a whole one if needed. I get up around 9 to 10 and do not leave the house any earlier than… Read more

I was taking Penicillin as prescribed by my dentist for surgery. On OFEV 300. I was shocked when all my side effects DISAPPEARED for a solid month!  Unfortunately they are back. I mostly have the bathroom issues sort of under control. I feel bad a lot of the time so I just try to “sleep it off” if you know what I mean.

I an 74 and on OFEV 300ng daily. I have been able to to improve my situaion by takin 1/2 Immodium daily. I stiil have to go at least 3 times daily. I am up until midnight and find that I need to be home typically from 11 am to 3 pm most days. I make all my appointments late afternoon. If i know that I have to be somewhere earlier than that I… Read more

I have been on OFEV 300mg for 18 months. I’m tired of feeling bad most days. I have nearly a 3 month supply of 150 mg pills. I am wondering if I can safely take a 150 at night and then CUT a 150mg in half to take 12 hours later. I would then theoretically be at 225 mg per day. Has anyone here tried this?  Any input will be very much appreciated!

I started on OFEV around 6 months ago. Two 150mg daily, 12 hours apart. I’m 72 with mild fibrosis as well as mild emphysema. 70% lung capacity. I’m being tested tomorrow. Hope I still have the 70%! Started the OFEV and I had no issues for the first 3 months. Then unpredictable bouts of horrible diarrhea (sp?) and flatulence began. I began to… Read more

I am wondering if other OFEV users have the side effects begin a few months after using the drug. I was expecting these issues to begin almost immediately and I was greatly relieved when they did not. I hope this is only temporary for your husband.

I am a 72 year old male diagnosed with Mild Pulmonary Fibrosis and Mild Emphysema 2 years ago.  I have started OFEV one week ago today.  Two 150mg per day. Happy to report that I had only one slight diarrhea event 30 minutes after taking my first pill after a large lunch. I was very concerned about the side effects that many folks have. Just… Read more