Jane McBride

This was of great interest. I am on Ofev and since it seems to be stabilizing the IPF at the moment I am just trying to find ways to deal with the side effects comfortably. There seem to be any number of us dealing with the temperature range so I think of it as a side effect without official medical affirmation.
Almost every evening, I have been…[Read more]

Thanks for this subject, Mark. I am facing a very cold winter here in Illinois and would like some info on how to best handle my Inogen 3.  The hose and canula get very stiff as well. Wrapping the tubing up under scarves etc. helps but was hoping someone might have a suggestion as to acquiring tubing that gets hard and doesn’t start pulling away…[Read more]

Hi Fred and Wendy,

I find smaller meals helps with fatigue as well. The only draw back is balancing the meals and the Ofev dosage, which requires a “full meal” according to the instructions (has a similar problem with previous meds). Found I can balance both smaller meals and stave off some of the side effects of Ofev at the same time but it…[Read more]

@janette

Hi Janette,

Like you Ofev seems to have stabilized the progression of my IPF, lovely to hear. However, I too had difficulty with the intestinal side effects on the 300mg a day.  Not as badly as you but badly enough to plan my life around whether or not I could plan to go out with friends etc. My doctor changed the dosage to 200 mg…[Read more]

Thanks for the tip of wearing the cannula at the back. It has really given my ears a rest and doesn’t dangle down the front getting in the way of everything.  I wear it 24/7 and this suggestion was really a relief. Plan to  rig some kind of easy belt to help with walking around doing housework, etc.

Am going to experiment with the cannula on my I…[Read more]

Would appreciate recommendations for Pulmonary Rehab in Northern Illinois.