1. Obstructive lung disease includes conditions that make it hard to exhale all the air in our lungs. Whereas restrictive patients have trouble expanding their lungs with air…both symptoms share the same main symptom: shortness of breath when you exert yourself.

2. I find when I go to sleep at night, that first I take about 3/4 ounce…

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Doesn’t “Idiopathic” mean “Source unknown”?

Also isn’t it hard to believe that such a large percentage of us are labeled Idiopathic? Could that be what you get when such a large percentage of our research into our personal history proves fruitless?

Well, so far, I continue to hunt for those speckles of historic dust of knowledge that have so…

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Linda. you sound right on. I have taken over on my own behalf and have gone thru a good number of well intended Docs and PAs. Nothing against them and their good intentions, but if they are not ILD experienced and knowlegable then someone may be wasting your life line that’s left to some degree and you need to be very comfortable with anyone…

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I use a finger oxymeter to know my saturation. The Inogen pulse units put out the rough equivalent of oxygen that you would have gotten from a constant flow device but they only put it out when you breathe in triggering a repetitive series of pulses kind of like an aqualung. It charges a set of tubes with a zinc mineral powder the absorbs…

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I use the Inogen G5 portable during the day and a couple of the transformer/chargers (from Inogen or a lot cheaper from Amazon) that plug direct to the Inogen, The G5 is a pulse. What I like is curing my stupidity. I was buying high priced $260-$300 batteries all the time since I was constantly on the portable and changing batteries like every…

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I may have misquoted. sorry. It is united Therapeutics Corporation (UTHR)

Here is from their website. I am looking at getting my doc to add this to my Micaphenylate regime. So far I understand that the effect of a treatment appears to be rather short term like 15 minutes or so, is that right?

I have asked once before and found only a few people who have been on this combination of Micaphenalate (Cellcept) and Tyvasol (Treprostinol).

Now 84 I decided not to try other meds in favor of quality or quantity of life 5 years ago. So far still breathing but wishing it was easier (right or wrong). But using Inogen setting 5 all day and…

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Here are the two types of pendant vs mustache type oxygen economizers from the internet. The savings of oxygen up to 4:1 seems significant. Anyone have more info on these? Are there others we don’t show here? Looks like the only drawbacks are high cost. Maybe someone is working on a cheaper version. But, I assume as I work my way northward…

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Eva, can you clarify a bit on this? The unit that sits on your chest seems to be different than what the others seem talk about (the one that looks like a thick vinyl mustache when worn).

Does yours sit on your chest but then have a more normal cannula that goes around the ears and to the nose?

I have seen two different pictures of what I…

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I am also at my max of 5 stents as of last August, and I seem to see my DLCO improving a little bit. I have begun to wonder if 3 open chest/open heart surgeries may have had an impact on scarring and maybe even on the diaphragm tightness.

Thanks Richard, was the Tyvasol lasting much longer when you were at the higher doses or is it kind of like the Albuterol asthma inhalers where the effect doesn’t seem to be very long regardless.

Adele, my Rheumatoid Arthritis doctor may be thinking “Connective tissue” disease when pushing Mycophenylate where my Pulmonologists seem satisfied with IPF. Do you recall a specific test for Connective Tissue or was it more about inflammation indicators?

Thanks Tracy, thats what I’m looking for since my RA doctor is really insistent on me getting started. At my point in life I just don’t want anything that makes anything worse than it already is, if that makes sense?

My issue is that I have kind of plateaued and I hate to poke a sleeping tiger….

Diabenlo, did the Mycaphenolate cause any issues or side effects like the Ofev and could it be the reason you have not had worse condition until Covid?

I was doing fairly well until last May when I felt I might have had a touch of Covid or whatever and then things worsened. Dlco in particular dropped (21% pred), but may be inching back up…

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Age 84 and still looking for answers. Has anyone been taking Treprostinol, Tyvasol, or have any experience with it that can be shared??

I just created a table for the last 7 years showing test results from PFT tests, FVC, DLCO and RVC and their relative movement (downward). That is until last fall and this year, where I notice a nice burp upward…

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David, you’re right, but I wasn’t thinking that one could “run” a 275 watt 120VAC unit using the solar panels. They just come with the unit and could charge the battery which is simply a storage place until used. It also comes with standard 120vac charger for the battery in the unit that charges much more quickly.

My thinking is more in the…

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David, I understand what you say but my thinking is that as long as someone says they don’t know, and they call it idiopathic, then it leaves an opening for me to still try to find what caused mine whether drug, viral, bacterial, environmental, etc? Seems like someone will at some point… right?

Maria… I take statins and have for many years and have questioned the same thing. But when I question it in Co-Pilot the response I get is very low chance but always a possible….. and check with a doctor.

JSR, thanks for the input. Can you share what dose of Mycaphenilate you are on? I’m also curious what your Fv% and Dlco% are? So far I am considered RA-ILD of a resistive type but have held off on meds and moving carefully because of so many potential side effects.

Thinking the “cure” may be worse than the pain. So far I can handle the…

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John maybe you could add some info to the Post I just made asking for those who may have used Mycophenolate or Celcept?

Haven’t seen many people say they are using it but my Rheumatologist just pushed me very hard to use this for my Fibrosis that is theoretically caused by a very mild bit of Rheumatoid arthritis. She says she has a number…

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Have you used Celcept , (Mycophenolate Mofetil)?

I am very interested in any feedback here eg how long, results, side effects, what particular type of Fibrosis, recommendation? I may need to make a decision pretty soon and input is important.

This drug was strongly suggested by my Rheumatologist who feels it has had a positive effect on a number…

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Meredith, I agree wholeheartedly. I have had about 4 different Pulmonologists give me the “do it my way or the highway”on Ofev as being the only thing for me…period. In every case I have refused and continue to do so…. for now. I still may change my mind. But at 84 and Ofev only providing roughly 10% increase on the lifeline, I can only see…

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Yes– mine is not the same ILD as yours, but my wife has noticed numerous times that when stressed I seem to be breathing heavier on the oxygen. I really think that is common with “mankind”. Used to scuba dive and you could always tell when someone was sucking rapidly on that demand regulator and in a new situation:-)

I also have noticed…

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–My experience only. I’m 84 and been on these portables for several years now.

Liable to be different opinions here, and not willing to argue my point. I have used my Inogen One G4 that produces settings of L1-L3, and I am now using an Inogen G5 that produces settings from L1-L6. I’m on 24/7 and if traveling the portable units can be run…

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I’m sure not a professional but what you say makes some sense to me. If you can stop the offending item and you see improvement in the FVC measurements it sounds like a start that I would personally be glad to see in my own condition. I guess if it also had an impact on improving the DLCO measurements it would be a reason to maybe think…

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I have gained a lot of info. Thanks.

My G5 Inogen on L5 is holding me pretty well so far around 90% while up for about 17 hrs. My 120Vac Inogen “At Home” holds 98% saturation for the other 7hrs sleeping at L4. My Cardiologist put in a stent last Oct (which has given me a small amount of general improvement in breathing) and his comment today…

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John, I just learned a new name (Mycophenolate) thanks and looks like a much much lower price than some other drugs in use too. It also looks like it has some pretty good objectives and results from what my uneducated mind makes from reading the Co-pilot response for my input of (Mycophenolate and lung scarring). This is what CO-pilot sent back…

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Millie, I’m only doing what others can do as easily, using the pc, I suspect. That sure could be a Pandora’s box of issues. Here is what Co-pilot sent back to me when I typed in, “dusting with baby powder and lung fibrosis”:

“Copilot

<cib-message animate=”” visible=”” type=”text” source=”bot” mode=”conversation” serp-slot=”none”… Read more

Dan, I have kind of become intrigued with the idea of finding something that standard answers haven’t considered. I just typed in (Smoking and lung scarring) and this is what the computer “Co-pilot” sent back. I know a good number of people that smoked a lot and some have been long time living and still breathing. So all these stats say is that…

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John, wow, when I put “Flecainide and lung scarring” into Co-pilot it popped up clearly that one should talk to their doctor if using this as it does relate to scarring. I have seen Amiodorone as related to scarring too, I wonder if they are related.

Here’s excerpt from Co-pilot:

There have been case reports of flecainide-induced pneumonitis,…

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Bradley, when I was “diagnosed”it was in 2020, but when I checked back with my own file cabinet for past issues of other things, and several hospitals and clinics where I had xrays in earlier times (and got copies of the cd and the diagnosis at that time) I was able to create a timeline of sorts that said some scarring was diagnosed on xrays…

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Alex-Marion Hhmmnn interesting. I just poked ILD Lung scarring and Nutrofurantoin into Co-Pilot and got this:

Copilot

<cib-message animate=”” visible=”” type=”text” source=”bot” mode=”conversation” serp-slot=”none” product=”windows” density=”normal” table-version=”1″ current=”” indicator=”” katex-scroll=”” output-background=””… Read more

Only a tidbit, but maybe an iceburg?

This is very important to go to this URL address ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8285274/ ) and read the article on Drug induced ILD/IPF and read all and carefully note that it may have much further implications concerning drugs you may be on or have been on even though it only cites one specific…

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I try to plan for the future (so to speak). So, with my Inogen G5pumping along at equivalent to 5LPM and turning it up to 6LPM more often lately, it makes me think about the next step or two. Local outlets say that portable liquid or gaseous oxygen is not readily available as I graduate above 6LPM say 10 Lpm or so. So it looks like a…

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OK, I, an 84 year-old non-professional guy with half a brain and IPF, get a bit focused when it comes to trying to find out whats messing with my health (and life) and especially when educated professional people file my case in a box called “we just don’t know the source but its all being worked on”, and the prognosis seems like a really…

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Age 84 with IPF and plagued with no better explanation than “ideopathic means unknown cause” and realizing that a very large percentage of us are considered IPF (Unknown cause). Maybe we need to look closely at what we have done differently than others? Drug induced pulmonary fibrosis is a category.

So here’s my question and I’d love to see…

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I’m 84 with Resistive type IPF. Coughing can be an issue. I find if I sit straight up in a chair instead of lying even a bit back in a recliner it makes a big difference in how Phlegm goes down my throat from drainage. I also find that lying on my right side only at nite with head on pillow stops coughing in bed, but only after I have taken…

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Not being a professional in these areas, I am seeking input, info and experiences. The “Oxymeiser” (one brand) discussion has popped up several times but always seems to leave me wanting more information to assist as I later-on move from my POC unit into the higher oxygen needs that exceed my current POC Inogen G5 that only goes to setting 6.

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So, I am seeing info on the internet about a thick nose variety of oxymizer but then also about a round unit that hangs on the chest to do the same conserving thing. Can anyone differentiate whether they have used the “chest” pendant variety of oxygen leveraging unit vs the node variety?

My doctor originally gave Rx for oxygen bottle and oxygen pendant but at that time the lower L3-4 need for oxy made me decide for a concentrator instead. Now I’m 24/7 at about L5 and know that sooner or later I’ll be heading for oxy again. The pendant I heard about sounded like quite a boost as far as length of time for a bottle of oxy, like…

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So let me foggy this up just a bit? By choice I’m not taking any specific meds, age 84. Have had signs of scarring in xrays and scans over 10 years. Only 4 years ago it became an issue because of shortness of breath on short walks to the street. Then they said it was IPF with no majoe changes in two years (we’ll see in a month) and offered…

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Since I am looking toward eventual Oxy tanks, your linking of two or more tanks strikes me as interesting. But the more I think about it, the more I wonder. I am not a professional nor engineer, yet my natural logic makes me want to think that when you hook two POC or oxygen units together that it will not double the oxygen % content but only…

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Have you investigated the Oxygen multipliers that fit in the canula line and store extra constant flow oxygen between your intake breathes? They say they can produce up to 4 times the breathing time because they only release on the intake breath and shut off like a POC unit on the exhale breath. I just posted some info yesterday but don’t see…

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<b class=””>I don’t use oxygen tanks and will likely head in that direction sooner or later. But I did recently notice some conversations regarding the use of oxygen tanks for canoeing and other water sports and concerns about weight and useable time of oxygen tanks vs concentrators. It reminded me of this article that I had seen and…

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Sailor, I share your concerns. I have had this thing far too long now (maybe 10 years by old scans)and the testing is one I’ve questioned many times. They seem to push too hard and too long for my comfort because any total exhalation of breath for the PFT test results in my coughing like mad until I can get it under control (with a bit more…

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I also have a Wellvue watch and finger device that I wear once or twice a week. It is extremely worthwhile for me and gives very accurate readings thru the nite when I use it most. Best is being able to print out the fairly detailed graphs of O2 and Heart Rate and O2 scores etc on my Iphone screen and PC and see where simply getting out of bed…

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Alex, can you tell us a bit more about your experience with the honey and Tyvaso (Treprostinil)? I had it suggested to me but never followed up on it. Its for Cardio Pulmonary Hypertension – right?

Is yours the newer oral version?

Benefits to you so far? (feel better, breathe better, walk further etc?)

Side effects?

Has it dropped your right…

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Not sure of the question as asked, but I am on a G5 Inogen and running at #5 setting and 84 in June and purposely not taking meds other than every other day Azythromycin as a prophylaxis against the things not planned on. My 4th Doctor also provided me with a full prescription of Azythromycin and a Z Pack (Prednisalone, for our medicine…

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Larry, I am 83 and have numerous years of slow developing Fibrosis getting worse now and at least 10 years of scarring/fibrosis identified on Xray/C-Scans. Also by choice I am on no meds as a matter of personal choice and awaiting a cure just in case….. life has been good. Some of my many scan analysis findings appear to have been a repeat…

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