John Kane

I was diagnosed in May of 2019. My wife was with me for the post testing discussion with the Pulmonologist. We agreed that it would be best to tell both of our adult kids right away. Very glad that I did and have updated them after each testing testing since then. At this point our friends and relatives also know, the support has been unbelievable.

Buy the best A/C filter you can find and change it once a month.

Teri, is your paleontologist looking for Jurassic or Mezazoic requirements?

Two years ago, when we were trying to figure out what Washington with me, I took myself to an Allergist. All the testing came out negative but she prescribed Azelastine for my sinus/ runny nose issue. This works very well for me, better than the Flonase I was using. IMHO anyway…

Joy, I have been on Ofev for just about two years now. I always eat before I take the pill, oatmeal with nuts and fruit or toast and eggs in the morning. I find that overall the oatmeal works best. For the evening pill I make a peanut butter sandwich or Greek yogurt and nuts and fruit. I take my pills at 9am and 9 pm ish. A lot of the GI issues…[Read more]

Have been on Ofev for two years 150 mg x 2. Y gastric issues were very strong and constant until I stopped drinking coffee…Now I would say that they have been reduced by half, as far as cramps go. The diarrhea continues, but not as bad as before. I believe that the acidity of the coffee added to my side effects.

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.

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.

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.

Call the manufacturer and ask about an Assistance Fund.

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]

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.

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.

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

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….

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.