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John Kane replied to the topic Breathing Issues and Started OFEV This Week in the forum Join the Discussion: Welcome to all PF/IPF Patients 7 months ago
Hi Cheryl, I have been on 150 mg Ofev tablets since Nov 2019. My main side effect is GI and this varies by what I eat with the medicine. A salad doesn’t cut it, but protein in any form seems to minimize the distress. I also note some fatigue, although this seems to be minor yet consistent. Hope this helps.
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John Kane replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 8 months, 1 week ago
I have been taking Ofev, 150 mg pills twice a day, for 9 months. I take my morning pills at 9 with breakfast. We eat dinner at normal times, around 6 ish and I take my second pill at 9pm with a moderate snack. Usually yogurt or a peanut butter sandwich does the trick. Snacking too light tends to aggravate the stomach. Hope this helps.
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John Kane replied to the topic OFEV and milk in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 1 week ago
I have been on Ofev for 6 months, 150 mg twice a day. Five days a week I have oatmeal made with milk and have not had any issues. The other days I have an omelette, or some eggs.
I haven’t noticed any taste changes, or loss of appetite.
Yogurt was ok but left me feeling hungry, even with fruit.
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John Kane posted an update 10 months, 2 weeks ago
What can trigger an exacerbation?
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John Kane replied to the topic Nintedanib… Dosage in the forum Join the Discussion: Welcome to all PF/IPF Patients 11 months, 1 week ago
Call the manufacturer and ask about an Assistance Fund.
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John Kane replied to the topic I Did Everything Right, So Why Did I End Up With Pulmonary Fibrosis? in the forum Flash Briefings & Podcasts 1 year ago
I was diagnosed with IPF last June. My father died of COPD/ emphysema and my mother did also, I was told. Both were heavy smokers. Last week, I found my mother’s death certificate which I had never seen before. IPF was listed as her cause of death.
Knowing what I know now about this disease, I am amazed that she had it. Never saw her near any o…[Read more] -
John Kane's profile was updated 1 year, 1 month ago
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John Kane replied to the topic Am I Too Old for A Lung Transplant? in the forum Pre/Post Lung Transplant 1 year, 3 months ago
The Mayo Clinic told me that 70 is their usual cut off age, but, since there is nothing else wrong with me (yet), they can consider an exception…I had a great visit there.
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John Kane replied to the topic Do You Identify With Being 'Disabled'? in the forum Diagnosis Information and General Questions 1 year, 4 months ago
I also do not consider myself disabled, but I believe that I am early on in this disease. I did get a handicap tag but only use it if I have to walk a longer distance. I passed up a handicapped spot at the grocery store the other day. The gentleman who did take the spot was in far more need than me.
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John Kane replied to the topic What you need to know about Ofev in the forum Ofev (Nintedanib) 1 year, 5 months ago
Charlene, I am about to start Ofev. Where can I find actual studies/stats on the success for this drug. I watched the manufacturers video, but that is their spin. Thanks, John
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John Kane replied to the topic Harmonica Class / Pulmonary Rehab in the forum Hobbies & Projects 1 year, 6 months ago
I already have a good harmonica but the pulmonica looks interesting. I wonder if this is prescribed as therapy whether Medicare would pick up some of the cost….
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John Kane replied to the topic The Frequency of Changing Your Nasal Cannula in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 6 months ago
Charlene, I also use the Respironics Simply Go concentrator. It did not come with a backpack, just the shoulder bag. I did find, and buy a back pack for this unit, by Philips, on Amazon. My med supplier needed to order this, but I got it through Prime in 2 days. And less expensively.
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John Kane became a registered member 1 year, 8 months ago
@kanej
Hi John, thanks for writing to us and really good question! Unfortunately, acute exacerbations (AE’s) in IPF patients are really complicated and can be caused by a number of different factors from my understanding (non-medical one, as I’m not a physician). It even sounds as though the cause for AEs may be due to some things that effect one…[Read more]