• Ed Caraher became a registered member 3 years, 4 months ago

    • Welcome to the PF forums Ed. Thanks for joining us!

      • Thank you, Charlene. This is a first for me and I am anxious to hear how others are coping with IPF.

        • 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.

          • 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 ago at 72.8%, is down to 72.5%. Doc is not certain it is due to Ofev or my daily regimen of exercise. I walk and swim 5 times a week and he thinks that my body has adapted to the lessor lung capacity. In any case I want to know if anyone else has tried strenuous breathing exercises when they have had IPF and if there are any positive results.

            Finally, I am not sure how to get this message to everyone and not just you. And, I would to know how you are doing since we last wrote.

            Ed

            • 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. I also know of folks who have been told to go off the Ofev for a short period of time and let their system “reset” then slowly introduce it again. Have you tried either of these options? I understand the desire to stop taking it, for sure!

              Really glad your decrease in lung function is very small in 1 year, that sounds promising. Kudos to you for keeping such a strict exercise regimen, that is amazing. I know a lot of people who have benefitting from learning new breathing patterns after a Pulmonary Rehab program. Have you don’t one of those yet?

              You’re doing great re: getting the posts out there. To have your replies go to everyone, click on the “forums” tab above this message, and then click where you want to start your message based on what it is about, ie. the “Ofev” forum you can post about the ill effects of this drug. Not sure if this helps?

              I am doing okay thanks, tiring out a lot easier these days and finding my cough is increasing. Do you cough a lot Ed? I go for my PFTs in June so I am hoping there is some good news with them! Otherwise, doing my best to keep active and optimize the use of my lungs, hoping to keep them strong. Thank you for asking!

              Charlene.

              • 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 called Zofran or something similar. Charlene how do we get the word out?

                • 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 since starting Ofev and haven’t been able to stay out of the bathroom for months at a time, it just depends on how everyone is effected by the drugs unfortunately. Zofran (Ondansetron) is an excellent drug but also doesn’t always work to relieve nausea for folks. Great topic of discussion though – maybe you could start a new forum topic of this Lorena? The more people share about the drugs that help them manage the side effects of the antifibrotics, the better for those starting out. Let me know your thoughts 🙂

                  Charlene.

              • 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 there. Never heard of anything about pulmonary breathing exercises and would like to know more. Since, according to my sons I am the most inefficient swimmer, I breath very heavily when I swim my 600 meters and am exhausted at the end. No coughing these days, however there was a year ago.

                My 2 docs have not commented on this fact after I told them several times. When I lie on my right side and breath out there is not residual air. However when I do the same on the other side there is lots of extra air audibly leaking out. It used to be up to 10 seconds but these last few months it has dropped to 3 or 4 seconds. I hope that is a good sign but…….I do not know. Don’t even know the reason why?

                If this does not go to the forum can you forward it or once again tell me how to do it. Thanks for getting back and hope you are improving with that cough.

                Ed

                • 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 bottom to a start a new topic within the forum. Not sure if this helps? I’m glad the drop in Ofev mg/dose seemed to help a bit, I’ve heard this is effective for a lot of other people as well. I’ll keep my fingers crossed that the CT scan of your digestive system is positive, and that your cough stays away for a long time still. It is such a pesk to have the IPF cough!

                  It is odd that your physicians haven’t addressed the issue with how you lay. I wonder if a transplant centre would have more insight into this? Let me know if you have more questions about the forum and navigating it, I am happy to help! Take care Ed, thanks for writing.

                  Charlene.

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