Pete

The PRM-151 trial was canceled last month Due to efficiency.

The Inogen 5 produces 1.26 LPM (1,260 milliliters) max at setting 6. So, if you breathe 20 times per minute you need to divide the 1.26 LPM by 20 breathes to find out how much O2 you are actually getting per pulse. It works out to be 63 milliliters per breath and no wasted O2. Inogen 5 cannot produce 1.2 L (1,260 milliliters) for every breath you…[Read more]

Charles, what kind of portable unit do you have that puts out 2L, let alone 3L or 4L or is it an E tank?

Or do you mean you put your portable on setting 2 and move it to setting 3 and setting 4.

They should bring back the liquid oxygen so everyone can benefit from it. The O2 companies should be more concerned with peoples health instead of their bottom line. I don’t see how people in charge sleep at night.

Sherry, LOX is abbreviation for liquid oxygen. It is stored in a tank in liquid form at -300 degrees. When the liquid O2 is exposed to warmer temperature it changes to a gas form so it is breathable. Liquid oxygen takes up less space than oxygen in its gas form, making it easier and lighter to carry around. A LOX portable tank will last approx. 7.…[Read more]

There are no POC’s that can produce 5 LPM in this world, only the bigger Home concentrators can and weigh 35-40 pounds. That 5 on your unit is just a setting and does not indicate 5 LPM.

From the sounds of your O2 dropping into the low 70’s, I don’t think a POC will support your needs during exertion. Your pulmonologist can walk you on a treadmill and easily determine your O2 needs during exertion. I use 2 LPM at rest and 8-10 with exertion during rehab. I am one of the lucky few that still has access to LOX and can carry the tank…[Read more]

I had some rash on my arms and back of neck a couple months after I first started taking Esbriet when I traveled to Sunny Florida. That was the only time though. After about 6 months of taking Esbriet I no longer got any rashes even after golfing in the sun for 5 hours and no sunscreen. I guess my body got used to Esbriet and made its own…[Read more]

Thanks Cheryl and Arnold.

Charles,
You do make some good points in your post. I just hope for your safety that you realize that the 4 on your portable is not 4 liters. It is more like 1 liter in reality at the highest setting. The manufactures of those lightweight portables need to change the markings to .25, .50, .75, 1 if they want to use liters then it would be telling…[Read more]

Natalie,
There is so much misunderstanding between pulse and continuous O2 out there between doctors and sales people. Pulse setting 5 on your Caire Freestyle Comfort is not even close to being 3LPM continuous. The pulse 5 setting on your portable Caire Freestyle Comfort is outputting 1050 ml of O2 per minute max (1 LPM). Your 3LPM concentrator is…[Read more]

I did the same by calling Genentech and they reached out and helped me.

I agree Pat, I don’t see progress being made in humans, only in mice.  So from a mouse study to geting approval I would estimate at least 5 years. And most of the progress that looks good in mice do not make it past Phase 2 of a trial. Trials take years to complete and to analize the data. Then FDA takes years to approve. Research seems to be…[Read more]

Don’t you need to take OFEV with a meal? 9 PM seems rather late for a meal .

A lot of great ideas. Thank You all. I found a pill container with 3 compartments. I am going to try using that for my Esbriet meds first and see how it goes. I thought I was the only one with this issue of forgetting meds, but now I see many with this issue. LOL

Thanks for the great tips folks. I will try them all. You would think the designers of home units and portable units would have designed something to hold the cannula and keep it germ free when not in use.