chuckgalloway
Forum Replies Created
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I’m taking Ofev, diagnosed in 2018, walk 2 miles 3 or4 days a week. I went through pulmonary rehab and was a little disappointed. There was some stretching and warm up then on to a rotation on a treadmill, bike, arm machine or Newstep working up to a 1 hr total exercise. Twice a week for 10 sessions, a 6 minute walk test before the first session and again after the 10th to measure the effectiveness but they never disclosed the results. I guess there was some benefit as my strength was a little better.
The best thing that I got was a device called “the Breather”. It’s an adjustable restrictive breathing device that helps strengthen the diaphragm and teach breathing using your diaphragm. Starts out easy but it does get much more difficult as you progress through the levels. You can buy them online.
I couldn’t take a deep breath without coughing but the Breather has helped a lot with that. I’m looking forward to my next testing to see if there is a difference.
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My doctor said he was going to start the paperwork for me. Can’t wait to find out how it goes. I’m on Ofev now.
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My doctor prescribed ipratropium bromide for my runny nose and it works great. Zyrtec and Claritin were not effective at all. Claritin D worked but also prevented my ability to urinate after taking it for a couple of days. No side effects of the ipratropium bromide so far. Each application lasts 6 hrs then just spray again.
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I have tried to qualify for clinical trials but either I didn’t meet their FVC(2 different trials) criteria or was bounced because of a stage 0 melanoma which was surgically removed with no further treatment 4 years ago. I’m already taking Ofev and the trials allowed Ofev along with the investigating drug.
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Thanks for the story. Nice to hear of what might be ahead and how humor can win out.
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I was diagnosed with IPF in 2018 and I have the same runny nose. Tried Claritin and didn’t do much. Tried Claritin D and it cleared up but it also made urination difficult to the point of not being able to go at all. Stopped the Claritin D and finally was able to urinate. Tried Flonase and it helps some but still will run with any provocation like eating or facing a strong breeze. Still get mucus build up in my throat over night leading to coughing. Will petition the pulmonologist next visit for something else.
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My pulmonologist prescribed Ipratropium Bromide nasal spray and it seems to work very well. 2 squirts in each nostril and good for at least 6 hours, then just spray again. No side effects yet.
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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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Paul,
When you say you didn’t notice differences between Ofev only or along with Jascayd do mean difference in the side effects or in the progression of the fibrosis or both? Are you sure you didn’t have the placebo during the trial?
Regards
Chuck
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I arranged to eat at 6:30am and 6:30 pm. I don’t like most breakfast food anymore – just got tired of eggs and sausage. Still like bacon so that is every morning along with peanut butter for more protein. Dinner is easier.