[Pete]

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.

[Pete]

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.

[Pete]

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.

[Pete]

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 in a back pack while shopping. These O2 companies need to all get back to distributing LOX instead of the multiple E tanks. LOX costs more than E tanks and they worry more about their bottom line than people’s health. It should not be that way.

 

[Pete]

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 necessary adjustments.

[Pete]

Thanks Cheryl and Arnold.

[Pete]

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 you the correct amount of O2 you are getting. It is impossible for the small sieve beds in those lightweight portables to output 4 liters of above 90% O2 in one minute time. It could put out 4 liters but it would take 4 to 5 minutes to do it.

[Pete]

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 outputting 3000 ml per minute. Do the math and you will know why your portable is not going to work for you. Just look at the size difference in your machines. As smart as some doctors are they do not know this and do not have any common sense to figure it out. Its what we used to call book smart only. Put a screwdriver in their hand and some would not know which way to turn it to loosen a screw. There is an portable Eclipse 5 that outputs 3 LPM continuous that is 2.5 the size of your Caire that would work for you now or you need to switch to tanks or liquid O2 when going for a walk. If your anything like me you will need more O2 for exertion than at rest. I hope this helps you a little.
Pete

[Pete]

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

[Pete]

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 still  concerned with studying meds to slow the progression down with less side effects as the meds currently approved and not concentrating on repairing scarring. Its been over 10 years since Ofev and Esbriet did trials and research has not been able to find any better meds yet. So maybe in five years they may have a new med costing 20 grand a month. I have just been seeing a lot a false hope. If PF got the attention world wide that Covid got they could come up with something sooner but I don’t see that happening. These are my thoughts and I do hope I am wrong. A little history on Esbriet is it was approved to use in Japan in 2008, approved in Europe in 2011 and it did not get approved in the U.S. until 2014,

[Pete]

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

[Pete]

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.

[Pete]

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?

Elimination
The mean terminal half-life is approximately 3 hours in healthy subjects. Pirfenidone is excreted predominantly as metabolite 5-carboxy-pirfenidone, mainly in the urine (approximately 80% of the dose). The majority of ESBRIET was excreted as the 5-carboxy metabolite (approximately 99.6% of that recovered).

[Pete]

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

[Pete]

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.

[Pete]

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 10 hour window rather than a 24 hour window would work as good? I do not want to take them on an empty stomach.

[Pete]

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 style=”font-size: 13px;”>.</span></span>

[Pete]

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.

[Pete]

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 fly any where if I wanted or had to.

Thanks again, very helpful

Pete

[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.

[Pete]

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

[Pete]

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 take. The sieve beds and motor are too small to do that. The sieve beds in a home concentrator are much, much bigger than the POC’s and are able to produce up to 5 LPM continuous because of the size of sieve beds and the much bigger motor. A lot of the O2 from a home continuous concentrator gets wasted. So, on a home concentrator set to 2 LPM continuous and based on 20 breaths per minute you are getting a little over 100 ml per breath with the rest of the O2 (1900 ml debatable) being wasted. A 5-pound POC O2 output is not even close to a 32-pound home concentrator output but the POC minimizes wasted O2 by using pulse. The POC needs about 18.5 watts of power (battery)to run whereas a home 5 LPM concentrator needs 350 watts of power (wall outlet) to run.

[Pete]

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. 5 hours @ 2 LPM before needing refilled whereas an E-Tank will only last approx. 4.5 hours @ 2 LPM before needing refilled.

[Pete]

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