chuckgalloway
Forum Replies Created
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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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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.