@ed-caraher
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Charlene Marshall posted a new activity comment 3 years, 11 months ago
Hi @ed-caraher, thanks for writing! I got your message okay, although it is as a “status update” as opposed to in one of the forums, but that is okay 🙂 If you want it to be in one of the forums, you have to go here: https://pulmonaryfibrosisnews.com/forums/ .. click on the topic of interest/which forum you want to contribute to and scroll to the…[Read more]
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Charlene Marshall posted a new activity comment 4 years, 4 months ago
Hi @ed-caraher, I really hope the conversation with the Dr. goes well. There is something to be said I think with a large number of people on this forum unable to tolerate the higher doses of Ofev but still being okay on the 100mg. I hope that is an option for you, or stopping it for a short window of time to let your system (and you) catch a…[Read more]
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Charlene Marshall posted a new activity comment 4 years, 4 months ago
Hi @ed-caraher, oh I am so sorry to hear of this experience that you’re having with Ofev after being on it for so long. That is terrible, and must make the day-to-day living so tough …
The only “good” news I have to share is that you’re not alone. I know several folks on this forum who ended up not being able to take Ofev due to suddenly…[Read more]
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Charlene Marshall posted a new activity comment 4 years, 8 months ago
This is a great group of people @ed-caraher who are always happy to share their experience(s) and coping techniques for living with IPF. If there is anything you’re specifically wondering about, please don’t hesitate to reach out and/or make a post 🙂
Charlene.
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Hello again, Charlene, I have been coping with Ofev which seems to do more damage to my days than does IPF. Constant stomach problems and have not had a solid bowel movement since late January. Tried probotics, gluten free, sugar free, etc. with no change so finally stopped Ofev altogether.
Recent lung tests indicate that lung capacity, a year…[Read more]
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Hi Ed,
So nice to hear an update from you, thanks for writing. I know the Ofev side effects are sometimes intolerable, the GI and stomach issues can really decrease our quality of life. Have you talked about reducing the dose with your doctor? I know a lot of people who went down from 150mg twice daily to 100 mg and seem to tolerate that better.…[Read more]
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Hello Everyone. I am so frustrated by the fact that there are medications that doctors can prescribe that counter act the side effects of he anti-fibrotic but so many people aren’t being given the option of trying them. From the reports I have seen they are very effective. One is Imodium for diarrhea and the other is for nausea and vomiting c…[Read more]
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Hi @lorena,
Great question/topic! There are lots of different medications out there that can help with the side effects of the two antifibrotic medications, although not all doctors are willing to prescribe them and in my experience, over-the-counter medications (ie. Immodium) aren’t enough. I know lots of people who’ve lived off of immodium…[Read more]
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Thanks for getting back to me……. I still am not able to get to the forum since there is nothing above this message. Perhaps it is my lack of computer know how. Replying to your queries: I did drop back from 150 to 100mg and that helped for a bit….currently scheduled for a ctscan of the digestive area to see it there is something else…[Read more]
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Hi @ed-caraher, thanks for writing! I got your message okay, although it is as a “status update” as opposed to in one of the forums, but that is okay 🙂 If you want it to be in one of the forums, you have to go here: https://pulmonaryfibrosisnews.com/forums/ .. click on the topic of interest/which forum you want to contribute to and scroll to the…[Read more]
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Thanks very much for your quick and informative reply, Charlene. I will ask the doctor about reducing the dosage or quitting the drug altogether today if he is available. As well, keep watching this forum for any updates.
You are very gracious.
Ed
Hi @ed-caraher, I really hope the conversation with the Dr. goes well. There is something to be said I think with a large number of people on this forum unable to tolerate the higher doses of Ofev but still being okay on the 100mg. I hope that is an option for you, or stopping it for a short window of time to let your system (and you) catch a…[Read more]