don-moffett
Forum Replies Created
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Hello Margo,
Understand your concerns. Saying that, Ofev is an excellent manager, he will learn what he can eat or what will have a reaction with Ofev, it is a bit unforgiving. He needs to keep his weight up, so if he can eat jerky and have no adverse reaction, let him, my opinion. As far as travel, I am planning a trip that requires air travel, I talked to my doctor so he ordered a high altitude test and determined I would not have a problem. He said I would notice a minor difference and I should carry my inhaler and use it if I need it. The key recommendation I would make is that he take daily walks and keep active. It is a journey, Ofev and his body will manage him. As far as his dad, he needs an air filter in the basement, I don’t allow smoking around me at all.
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I did have an adjustment period, my doctor prescribed an enhaler, Albuterol Sulfate, I used it for a few weeks and then it settled down and I only use it on difficult days.
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Welcome, and bless you and your journey before you. OFev is an adjustment period, learn what foods work for you, OFev will tell you what doesn’t. Talk to your doctor about Rx strength Omega 3 fish oil, there are great research studies that describe the positive impact it has. We are all here to support you Dan, just reach out.
Don
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I have taken RX strength omega 3 fish oil during my IPF ordeal, as well as Ofev. The progress has dramatically slowed, I would definitely recommend taking it. If your DR prescribes it , most likely your insurance will pay and you will get highly refined RX strength. A decent article: https://newsroom.uvahealth.com/2024/01/03/healthy-omega-3-fats-may-slow-deadly-pulmonary-fibrosis-research-suggests/#:~:text=Fibrosis%2C%20Research%20Suggests-,Healthy%20Omega%2D3%20Fats%20May%20Slow%20Deadly%20Pulmonary%20Fibrosis%2C%20Research,fibrosis%2C%20UVA%20Health%20research%20suggests.
newsroom.uvahealth.com
Healthy Omega-3 Fats May Slow Deadly Pulmonary Fibrosis, Research Suggests
Higher omega-3 levels were associated with better lung function and longer transplant-free survival for patients with pulmonary fibrosis.
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My doctor immediately discussed the medications, I choose OFEV because of its successful track record. He explained the possible side affects and In experienced many, most of which I caused myself by not avoiding foods that I should have. OFEV is unforgiving, follow the rules and you will adjust. Learn from others experiences on the forum, I have had a smoother adjustment when I did that. Don’t prolong
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I have had Pulmonary Fibrosis for 2 years. I at times have breathing difficulties, my doctor put me on a Abunzinal inhaler twice a day, and if I experience difficulty I can add a third. It does the trick. Upon diagnosis, my Pulmonologist put me on OFEV 150mg 2x a day. It did take some adjustment, however I followed the routine, took advice from users on this forum and I have adjusted. I am fortunate that with the inhaler, OFEV and dietary guideline adherence, I have greatly slowed the progress. Don’t let people scare you away from OFEV, I admit it is a hard adjustment, but considering the alternative, it is well worth the effort.
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I am 72 years old with IPF taking OFEV. I have muscle aches and pains primarily when I am not active. Do to some side affects I just sit around, read and watch TV, and it is absolutely the worst thing I can do. I got past that phase and make myself walk, do things around the house, most important be active.
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Interesting, I made oatmeal cookies with cinnamon and raisins, and it did the trick for me, I can see where the cinnamon raisin bread would work as well. I cut the white sugar by 2/3 and increased brown sugar by 1/4 cup. I used the Quaker Oats recipe. I eat a couple abd take my OFev and then a third one, and I am good to go. It is all about what works
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I was given fosfomycin
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I was diagnosed with IPF 2 years ago. My doctor recommended OFED and I began taking it twice a day. I have to say it was a learning experience, OFEV is unforgiving, if I ate the wrong thing I paid the price. Saying that I learned from experience and others on the forum, I am stable and my numbers are good. I have not had to rely on oxygen, knock on wood, I do use an inhaler twice a day and it greatly reduces my cough. My doctor says I have stabilized. I have started using the zinc supplement and I am scheduled for the complete battery of tests in March. Time will tell if OFEV helps or not, however I have become an avid reader about IPF both in American Medical publications as well as those in English from other countries and it appears that it is the medication with the most promising results.
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I have been on on Ofev for 2.5 years. My last appointment was in January 2023 and the doctor was very surprised at the very slow rate of growth, i a still at stage II for over a year. He moved me to an annual appointment, so in January 2024 I will have a report. I feel good, I still work in the yard, and took the high Altitude test (HASP) and was cleared to fly without oxygen assistance. So I would say that Ofev is working.
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Crackers and peanut butter with 9pm Covid , English muffin and vegan sausage with pill at breakfast. Like other posts, eat 1/2 food take pill then other half. Stay away from acidic foods. I miss my Bloody Mary.
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https://www.cedars-sinai.org/newsroom/zinc-found-to-play-an-important-role-in-lung-fibrosis/
i have 11 mg in my multivitamin I am adding a 15mg 2x a day