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… 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.… 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… 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… Read more

Thanks Cheryl and Arnold.

I heard the PRM-151 Phase 3 Clinical Trial has been stopped. Has anybody heard any information on this trial and why it might have been stopped? It was supposed to have over 600 participants. Anybody in here in the PRM-151 trial?

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… 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… Read more

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

Has anybody who has been in a clinical trial ever found out if they got the Study drug or the Placebo when the trial was completed? I have completed two trials and was told I will not be told what I was given until the trial is completely finished by everyone in the trial until sometime towards the end of 2022 and mid 2023.

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… 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

How do you remember if you took your meds or not? Whether it be morning dose, afternoon dose, or evening dose. My morning Esbriet I place it next to my coffee but the afternoon or evening dose sometimes I can’t remember if I took my pill or not.

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.

No matter what I try my nasal cannula hose always seems to end up on the floor or ground when not in use.  It happens with my home concentrator and my portable concentrator. Does anyone have any tips on how to prevent the nose end of the cannula from hitting the ground? Especially in public places and outdoors.

I found this info on Esbriet and am trying to understand it. Is it saying 80% of this expensive drug goes right through you and only 20% is being absorbed?
<h5 style=”font-size: 13px; font-family: ‘Open+Sans’, sans-serif;”>Elimination</h5>
<h5 style=”font-size: 13px; font-family: ‘Open+Sans’, sans-serif;”>The mean terminal half-life… Read more

No appetite issues for me Terence. Always hungry here. Trying to lose a few pounds but its not happening.

Thank you Karen and Regina you both have helped. I will try the 4 hour intervals at meal times even though the Web Doctor in me thinks it should be 8 hours and thinks I am developing an ulcer.

Thanks Karen, I hear what you are saying. I thought 3 times a day would mean spreading it out every 8 hours and that’s what I was trying to do (breakfast, dinner, and b4 bed). My 3 meals are not 8 hours apart. My meals are only about 4 hours apart during the day. My meals are from 8 am to 6 pm. Do you think it is ok to squeeze the 3 doses in a… Read more

Does anybody know if taking Esbriet on an empty stomach can cause an ulcer? I usually take my last dose before I go to sleep at night and do not like to eat before going to sleep. The two other doses I take during the day are after meals.

I hear what you are saying Mark but it’s hard for me to understand when they knew a vaccine was coming over 6 months ago and there are people way above my pay scale getting paid to figure this issue out. I wonder where I can apply for this type of job.<span style=”color: #303030; font-family: open sans;”><span… Read more

I wonder why if the Covid-19 is so bad for everybody they aren’t vaccinating people 24 hours a day 7 days a week (24/7) ? I would have no problem going to an appointment in the middle of the night if that is what it takes to speed up the vaccination process.

When do you think IPF patients will be eligible for the covid vaccine? I am thinking late January but hope sooner.

Hi Charlene,

Thank You for your input. There is a lot of info in that one paragraph I did  not know or even thought of. I did not know POC’s flow rates only go so high, ten pounds is a lot of extra weight to carry around, nice to be able to charge battery in you car, and being able to fly with one is great. I have tanks so I currently cannot… Read more

Hello all,

Does anyone have info on Portable Oxygen Concentrators? I am looking for which kind work best and their cost. Do you have to buy them or can you rent them? Does Medicare cover these machines? Are they continuous flow or pulse?

Thanks for any info.

Pete

 

I also did not qualify for this trial because of my CT Scan did not the show the radiologists what they were looking for. I was looking forward to this trial too.