John Kane replied to the topic Wristband Pulse Oximeter in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 1 week ago
I just started looking into wrist worn sensor watches. Whiting s is the only one that says they are FDA approved for the SP02 sensor they use.
More research to be done.
John Kane replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 5 months, 1 week ago
I have had IPF for about 3 1/2 years and take Ofev for it. My wife and I have had the two Covid shots and one booster, last year.
Three months ago we both tested positive for Covid. We both had fatigue(on top of what I already have). My wife had heavy congestion and I had heavy GI issues. Don’t know why we were different but at least I did not g…[Read more]
John Kane replied to the topic travel while on ofev in the forum Ofev (Nintedanib) 5 months, 1 week ago
It took me about a year to minimize the Ofev side effects. What helped me the most was giving up coffee. It seems that the acid, not the caffeine, was the major culprit.
Diet wise, tart or sour tastes, not spicy, would bother me. Dairy does not bother me at all.
Took a while to figure all this out but we traveled when we could.
John Kane replied to the topic Is ipf genetic? in the forum Join the Discussion: Welcome to all PF/IPF Patients 8 months ago
My mother died of IPF at age 72. Was diagnosed 3 years ago and am now 72. Am the oldest of 4 children, and the only one left. One of them died of IPF.
John Kane replied to the topic Telling your family in the forum Living with Pulmonary Fibrosis: 50+ 10 months, 2 weeks ago
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.
John Kane replied to the topic Household Chores & IPF! in the forum Diagnosis Information and General Questions 1 year, 1 month ago
Buy the best A/C filter you can find and change it once a month.
John Kane replied to the topic Ofev UK in the forum Ofev (Nintedanib) 1 year, 2 months ago
Teri, is your paleontologist looking for Jurassic or Mezazoic requirements?
John Kane replied to the topic Post-nasal Drip: Another Ailment to Deal With in the forum Diagnosis Information and General Questions 1 year, 4 months ago
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…
John Kane replied to the topic What's Worked for me with OFEV in the forum Ofev (Nintedanib) 1 year, 5 months ago
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]
John Kane replied to the topic abdominal cramps with Ofev in the forum Ofev (Nintedanib) 1 year, 5 months ago
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.
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 2 years, 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.
John Kane replied to the topic Just got approved for Ofev in the forum Ofev (Nintedanib) 2 years, 8 months 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.
John Kane replied to the topic OFEV and milk in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 10 months 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.
John Kane posted an update 2 years, 11 months ago
What can trigger an exacerbation?
John Kane replied to the topic Nintedanib… Dosage in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 11 months ago
Call the manufacturer and ask about an Assistance Fund.
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 3 years, 1 month 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 3 years, 1 month ago
John Kane replied to the topic Am I Too Old for A Lung Transplant? in the forum Pre/Post Lung Transplant 3 years, 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.
John Kane replied to the topic Do You Identify With Being 'Disabled'? in the forum Diagnosis Information and General Questions 3 years, 5 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.
John Kane replied to the topic What you need to know about Ofev in the forum Ofev (Nintedanib) 3 years, 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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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]