Just wondering how you are doing on Jascayd. I have been in it for 3 weeks and initially was quite happy to report I did not experience any side effects. However, I am now extremely fatigued, have a constant runny nose, and anxious. I don’t know if it is because of the medication or because I started on 2L of oxygen at the same time. My…

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I am using my oximeter while grocery shopping and doing small tasks around the house. I am very confused as to when I should be using my portable concentrator. At Pulmonary Rehab, it was determined I needed 2L while walking on the treadmill. When I’m sitting at home, it reads 95/96. As soon as I get up to walk around the house, it drops to…

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I am wondering what you learned about Jascayd at the Fibrosis summit in Chicago this past week. Will it improve lung function in any way? Will it stop declining lung function? Will it work for everyone with IPF or just in certain situations? How long does it take to get the drug into my hands? I requested it the day after it was approved…

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I’m 79 and diagnosed 4 years ago. On Ofev 100 mg 2x a day. I have never had diarrhea, but have experienced extreme bloating, acid reflux, and nausea enough that I have stopped and restarted the medications a few times. Through this forum, I have tried suggestions that have worked for others, but sadly did not work for me. Recently, I began…

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I am 78 years old and 4 years into IPF. Ofev has never caused diarrhea for me, but I’ve struggled with reflux, bloating, gas and extreme nausea. I have stopped and restarted Ofev periodically, but the same symptoms returned with each restart. I take 100 mg 2 x a day and have experienced a slow progression of the disease. Recently, through…

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My doctor thought this drug would be available by last Christmas, then changed that expectation to spring. Now I am concerned that fda cutbacks may delay this again, although I have no knowledge of that happening. Have you heard anything about where this drug is at in the pipeline? I read that it is “expected” to be submitted to the fda for…

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Here in Michigan, we have had a rise in temperatures over the last few days. The snow has melted exposing wet, moldy soil and leaves. I have had congestion in my lungs for the past few days and feel as though I cannot cough it up or resolve the issue even though I have started taking allergy medication again. Even my allergy immunization…

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I am starting Esbriet next week after stopping Ofev because of gastric side effects. I have been in Ofev for 3 years and have remained stable so I am disappointed that I can’t tolerate it anymore. I play golf and am concerned about the sun exposure. Will I need a hat to guard against scalp exposure (I am a woman with normal hair amount). …

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I have been on Ofev 100 mg twice a day for two years. The first year was minor problems, usually burping, belching, heartburn, nausea, gas, and acid reflux. I could get by with sipping ginger ale, sucking mints, and adding heartburn medication. The second year was brutal where these same side effects became intolerable and I continuously…

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