george-poulsen
Forum Replies Created
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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 very positively about what stopping the drug did for you. Have you seen a situation where a particular drug was stopped and you saw the FVC actually improve? Certainly it would be a reason to also have a long discussion with your prescribing doctor. You could always share that info here too.
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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 is that my particular situation has a high draw-down on my available oxygen saturation which is small DLCO is +/- 27% Pred. 50ft walk to sidewalk with G5 already holding 92+/- and it drops saturation to 75% but with 3 minutes standing stock still and G5 at 5 will get me back to +/-91. For me its either sitting or standing quietly and feeling good, or movement and gulping air. The problem here is we’re all different ages, different conditions, different points on our own decline curve and depending entirely on which type issue we are saddled with. Type of fibrosis, or emphysema or COPD or cystic fibrosis and the source to begin with and whether on meds or not. So far, for my own reasons, I am not taking any specialty meds.
But I still hope for and anticipate how to handle the added needs for the bigger machine or oxygen tank above 6LPM. Yes my greater fear is that the oxy tanks don’t readily let you take an extra tank or two (that stays full and might be recharged on the go, if elsewhere when empty.
So I instead am thinking toward the relatively small Solar Generator (it ‘s really just a big 12 volt battery pack of Lithium batteries, (about 18#) called an inverter by any other name, that is charged optionally by solar or household120 plug but gas engine not necessary. That’s how you get 120Volt power in Rvs or campers when in the woods or wherever. It transforms the 12 volt battery power to 120Volts AC and depending on size can power one of the 275 watt 120Vot Ac concentrators for several hours or more. The problem is bulkiness of a small overnight bag with, say a Caire concentrator inside and one of these small solar generators in tow as a backup since I believe the Caire has a battery to hold power a while when off the grid.
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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 on this drug and I find it very interesting from my own personal viewpoint. If its a (lot cheaper and stops the scarring) that would be extremely interesting to anyone! Do you get through VA or pharmacy and co-pay? and what strength? 500mg? Many side effects? I have looked at lots of alternatives and have refused all meds for my own reasons (and age) but this one is intriguing.
Heres co-pilot result:
“Copilot
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Mycophenolate, also known as mycophenolate mofetil (MMF), is an immunosuppressant drug that is used to treat a variety of conditions, including interstitial lung diseases (ILDs). ILDs can cause scarring in the lungs, inflammation, or a combination of both. If the ILD mainly causes inflammation, medications like mycophenolate may be prescribed to reduce the body’s immune response<sup>1</sup>1.
Mycophenolate helps to control inflammation in the lungs and protects them from ongoing damage. While it may not improve symptoms such as breathlessness and cough immediately, it can prevent the development of permanent scarring or pulmonary fibrosis if the inflammation is left untreated<sup>2</sup>2. It’s important to note that the benefits of mycophenolate may take up to three months to become apparent, and regular monitoring through symptoms and lung function tests, as well as CT scans, may be necessary to assess the response to the medication<sup>2</sup>2.
If you have concerns about lung scarring and are considering or currently taking mycophenolate, it’s crucial to discuss this with a healthcare provider who can provide personalized advice based on your medical history and current health status.”
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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 if we have smoked it puts us in a higher risk category of getting something we don’t want, but of course just because one did or does smoke doesn’t mean that’s an automatic condemnation. You should be able to get the same info and more detail by using the same search criteria as I did.You’re at least one of the lucky ones with strong genes or something. Here’s what I copied from Co-pilot:
“Yes, smoking is related to lung fibrosis. Research has shown that smoking is a significant risk factor for the development of idiopathic pulmonary fibrosis (IPF). A meta-analysis found that smokers had a higher risk of developing IPF compared to non-smokers, with a pooled odds ratio indicating that smoking increases the risk of IPF<sup>1</sup>. Additionally, former smokers were shown to have a poorer prognosis compared to current smokers<sup>1</sup>.
Smoking can cause inflammation in the lungs and increase mucus production, which can exacerbate pulmonary fibrosis symptoms and increase the risk of other serious conditions such as lung cancer, chronic obstructive pulmonary disease (COPD), and heart disease<sup>2</sup>. It is advised that individuals diagnosed with pulmonary fibrosis should stop smoking to prevent further damage to the lungs<sup>2</sup>.
If you or someone you know is struggling with smoking and concerned about lung health, it’s important to seek help from healthcare professionals who can provide personalized advice and support for smoking cessation.
academic.oup.com
Smoking and idiopathic pulmonary fibrosis: A meta-analysis
AbstractIntroduction. In this study, we aimed to systematically explore the relationship between smoking and idiopathic pulmonary fibrosis (IPF).Methods. T
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Alex-Marion Hhmmnn interesting. I just poked ILD Lung scarring and Nutrofurantoin into Co-Pilot and got this:
Copilot
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Nitrofurantoin is an antibiotic commonly used to treat urinary tract infections, but it has been associated with pulmonary toxicity, which can manifest in two main forms: acute and chronic. The acute form typically occurs around nine days after starting the medication, while the chronic form can develop after months or years of therapy<sup>1</sup>.
The majority of patients who experience pulmonary reactions to nitrofurantoin are women, likely due to the higher incidence of urinary tract infections in women and consequently more frequent exposure to the drug<sup>1</sup>. Pulmonary reactions to nitrofurantoin can range from mild to severe, with some cases resulting in hospitalization<sup>1</sup>.
Interstitial lung disease (ILD) is a group of conditions that cause inflammation and scarring in the lungs, and nitrofurantoin has been identified as one of the medications that can induce ILD<sup>2</sup><sup>3</sup>. The scarring, also known as pulmonary fibrosis, is often irreversible and can lead to significant respiratory impairment<sup>2</sup>.
It’s important to note that while nitrofurantoin can cause ILD, this reaction is considered rare. The risk increases with chronic use, and older adults may be at higher risk<sup>1</sup>. If you have concerns about nitrofurantoin and its potential effects, it’s best to consult with a healthcare provider for personalized medical advice.
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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 case. Certainly its not a reason to panic or to do anything without a discussion with your doctor. But it sure makes for a good reason to have that discussion. So do the further research first and include any drug you may be taking, you never know.
I have had suspicions of anything I was doing or operations or Rx drugs I was taking clear back to the beginning of my IPF. Trying to figure out “why me?”, because “things don’t just happen”. Although the one cited here is said to be a rare case, it is documented and has certainly gotten my attention, and if there’s one there may be a lot more. Notice it has implications for a much larger set or class of drugs that have been successful elsewhere and thought to maybe work with ILD too and we all need to be doing some serious research on word combinations of our specific drugs and types of ILD. I would also suggest that if you have the new test Search apps of Google and Microsoft etc that are using artificial intelligence to operate more efficiently, do so. The one I am using is “Co-Pilot.
So far I have spotted two drugs that I have been taking for some time and one is a DMARD /antirhythmic drug and the other is a blood thinner . I believe I have also been on a third which is a blood thinner too. By the way the Clopidogrel mentioned in this article is Plavix by brand name. Of interest is that there is a correlation of drugs I have taken and time-wise the development of my ILD and if I don’t slow it down myself I’m not sure who else will :-).
Seems too easy to say something doesn’t fit our template so lets just call it “Ideopathic”, which means source unknown. Every one is working hard at this so lets see how much we can add by our own knowledge of what we are, what we take, what we have have experienced and what may have helped develop this thing called ILD?
ncbi.nlm.nih.gov
Clopidogrel-Induced Interstitial Lung Disease: A Case Report
In patients, with cerebral infarction resulting from intracranial arterial stenosis, the combined administration of clopidogrel and aspirin may be needed for to prevent subsequent ischemic attacks. Clopidogrel has an inevitable adverse effect profile, ...
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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 my usual 1 ounce of Guaffenesin which is branded Mucenix. It should have nothing else in it and can be ordered right on Amazon in the larger bottles, since I take it whern I get up to cleat the phlegm quickly and also when I go to bed to be able to sleep.
I have also found that a simple old style pink Benedryl, (Diphenhydramine-I think) on going to bed dries Phlegm and drainage things up for sleeping and has a side benefit of helping me to sleep as well.
One last item…… I happen to have had numerous surgeries over many years and still take a very small 1/2 tablet of a 50mg Tramadol usually for pain along with a Tylenol and the two of them not only take care of back issues but they also seem to stop my coughing (probably from neutralizing the feeling of phlegm making me cough?) for the first half of the day. I can also say I’ve had the nagging cough and throat clearing for many many years and it is a blessing when you suddenly realize that you are not coughing as much.
As a last statement at 83 years, I have noticed that when I am silently sitting straight up at my computer and working silently , and not talking much to my wife or anyone else, that I realize I’m not coughing. Go figger. It takes an out goiing breath to talk and to cough>>>?
George
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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 3-5 time leverage and it sounded great. Now I’m wondering whether there might be several different types of the pendants. The discomfort you mention makes me reluctant to go with the pendant you mentioned. Any other models we don’t know about? My alternatives don’t sound real good from this.
George Poulsen
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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?
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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 the overall volume of enrichened concentrated air with the same % oxygen in it as one unit. It also seems that the demand regulator on one unit might interfere with the demand regulator of the other unit and create issues. On the other hand if you were trying to increase the actual % of oxygen in the air you breathe then you would have to connect POCs in series as in one output to the others input to allow reprocessing of air already enrichened. I guess I’m not sure whether increasing LPM is meant to increase the overall volume of air or the % of oxygen content moving through the canula.
I’m sure you’ve had the necessary discussions, but if not you might want to coordinate your efforts with both the oxygen supplier and your doctor. Any feedback you have on this would be appreciated since we all may be dealing with frustration over where we go when we’ve reached the limits on our POC units.
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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 it today yet. There are apparently several models and one is called a multiplier medalion (wears liker a necklace on cannula line and the other is a larger cannula worn under the nose. A good reference I found is at URL Address http://www.Respondo2.com and shows a blue table for different tank sizes at different LPM and the 3x and 5x Conservation flows available. I honestly know nothing else about these yet but am slowly increasing my Oxy needs so am investigating my alternatives as I move forward toward oxygen. I find the multiple POC units an interesting hook up and wonder if anyone has done any testing for real data from those. Here’s another reference below:
https://journal.chestnet.org › article › S0012-3692(22)03381-5 › fulltext
The Oxymizer Pendant: an Underutilized Oxygen-delivery Device
DISCUSSION: Long term oxygen therapy is indicated for those with chronic lung disease and hypoxemia. Typically, CNC is used but less conventional nasal cannula such as the Oxymizer can be utilized. This device has the advantage of reducing the oxygen flow rate by up to 65 % (1) and leads to
duckduckgo.com
oxygen multiplier medalions site:journal.chestnet.org at DuckDuckGo
DuckDuckGo. Privacy, Simplified.
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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 of oxygen between puffs) and yes it leaves one winded depending on condition.The last test I took in October last year was at UTSW in Dallas and the attendant was trying so hard to get me to get a good reading that we wound up 45 minutes late for the doctor and by that time he had moved on to his very full schedule. They tried but just not helping me in the meantime. Gotta remember I am the customer guys, no matter how you look at it, and the customer votes with feet.
Now I am dealing with my 4th Pulmonologist and a different testing facility and will have my next test at a different hospital, because some do tend to get a good reading without so many retries. Nobody’s fault really, just me trying to find a better fit with the testing and you’re right because my belief is that it only really provides results for others to look at and no curative for me at this time.
PS I am 84 and too old now for lung transplant and do not see benefit in the drugs offered for my situation as the added time they offer won’t really benefit me much. I will instead spend my time thinking of all the positive things that a good life and wife have provided for over 60 years. Your case may be different based on the type of IPF you have and your age and condition.
Lastly, I found years ago that I could use local doctors (with my medicare and own resources) and still obtain my meds through the VA. You may also be obtaining your O2 concentrators and any drugs thru the VA as well. I’m not certain but I am almost sure you can request a change of facility or speak with one of the counsellor/advocates to air your concerns about the level of help you are getting and consideration for you as a person and as a guy who has put it on the line for everyone else and who just wants a little consideration.
I also have begun using a stand-up little stair stepper each morning to begin building my heart and lungs a bit as well as lifting some ridiculously small 4 pound weights to try to rebuild a bunch of muscle I lost between last June and Novemebr (180 forever and right down to 154 now), maybe an exacerbation but I did have a stent put in last August too. My wife also swears that she thinks all the coughing every day has cost me the weight since it is like doing sit-ups all day. Actually I feel a lot better since this would be my old fighting weight from high school and military. I mention this only because I do sense a slight improvement in my overall constitution and have even begun working the Sudokus in the paper each morning to test my mental cognitive level and I do think it is improving! Best I can say!
I’ve accepted that I can’t stop this for now, and that a great many people are working on new drugs and approaches and hopefully I will l see something that works before I have to cross the street. So I spend a great deal of my available time in researching all I can in the IPF areas. Amazing whats out there to give you good reason for hope if you just shake yourself up a bit and say time to get started. Even those guys on Omaha beach had to say time to go guys, “Lets hit it!”.
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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 cabinet in case I feel a hard hit/ exacerbation coming on as we go into weekend and doctor not readily available.
So I don’t ever want that really uncomfortable feeling of being without my supplemental O2, 24/7. To that end the worst thing I can imagine is to have my G5 suddenly quit and to be away from home in the RV or a trip. So I just recently bought a few extra batteries and and extra charger (what a difference for always being charged- believe me!) and we have the car charger as well.
So I scared myself thinking about all this and then bought a second compressor so as to have a good backup available at all times in my office at home or if traveling. I bought the extra G5 from Minneapolis Main Street supply for $1395 (special and nice people) bare bones, no case, no battery, no cannulas, just a straight replace of main working unit if mine suddenly goes clunk, boom which mechanical/electronic things tend to do.
These were personal purchases because sooner or later with deterioration I will likely need Medicare support instead. The most important thing to me is like a good pilot having redundancy in most critical instruments it pays to feel good about having a backup if suddenly needed (even though hospitals and ambulances are available they still take a few anxious moments if not near by-right?) MOney spent islike a good insurance policy.
Also, my experience so far with the batteries, whether direct from Inogen or thru Amazon or wherever, is that they can only be relied on for up to about 6 months and then be careful, as mine seem to deteriorate after 6 months hard use. Mine bought direct from Inogen are readily exchanged if under a year old-overnight). The ones from Amazon can also be exchanged but I can’t remember if they”ll do it over 30 days because they were also cheaper.
***If you have read this far then I’ll throw in a pearl/from George….I have the G5 and also the AT-Home unit from Inogen and they tend to make your “pressing” finger tip sore from pushing on the start or stop and other buttons on the unit. SOLVED THAT ONE! I bought a small $2.00 box, at Lowes, of the tiny little Brown felt stick-ons normally used to put on cabinet doors to quiet them when closing. I put just one on the on off button on compressor and makes it soft on finger tip and also very easy to find correct button in dark if getting up. Problem solved…
***Now for a question as to who knows who puts out a portable unit that can do better than 6 LPM?? I know they will get heavier, but I carry my compressor on a push around stroller due to sore shoulders, cheap and much easier to have two hands available as needed.
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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 of prior findings along with some add-on findings that haven’t sounded right to me. I really believe scan reviews should stand alone first and then be additionally compared against your past scans for a convincing finding. Kind of like zero based budgeting.
I, too, finally found a doctor who gave me a much clearer understanding of the scans we are looking at. However, I am personally a very strong believer that if you don’t take advantage and take charge of every other single tidbit of info available to you then its your own life you’re taking a chance on, not your doctor’s (he still goes home at night). He thinks hard and professionally about your issue for a short period of time while tending to you,but you then have 24/7 to think about it and alternatives, and to take charge, always, right? So use that time better? I intend to have my cds reviewed by AI as I think it might detect and perceive far more accurately than the human eye. Hopefully this may provide an interpretation as to what the progression of scarring source is, when differentiated from current scans and actual autopsies and biopsies.
I have had numerous surgical procedures in my life so I have always asked the hospital for a copy of the Cd and finding, and they are available to the patient for the asking at the hospital records desks. This is the one time that this gathering of info for AI may just be a real bright star in my life as I am convinced that my analysis should not be RA or IPF since way too many are thrown into that “dunno” basket too easily and just maybe AI will look at it a different way.
For the record I have always asked detailed questions and even brought internet articles to the doctor and have occasionally been met with a “Dr Google” crack or a question as to whether I am a licensed professional. Those behaviors have resulted in my seeking a more open minded and compatible personality for a doctor. Again, “it’s your life” and you are entitled to search everywhere including a new doctor or the internet for whatever is available, and you should!
Finally, please, please, post your AI experience, as to location ,
contact number, pricing, any referrals required, medicare or not and
nature of results as posted and it will help a lot of us who want to do
the same thing.Not preaching and not a professional 🙂
George in Texas
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I may have said this before, but I take very small doses of Tramadhol 1/3rd of a 50 mg pill along with one Tylenol Arthritis cap. Provided originally for Back issues before and after surgery and pain that has become not only chronic but seems low rib areas on back and shoulder to shoulder and up neck are much worse with my IPF. Its only a band-aid cover up and I only take one in the morning (good for about 4 hours). I don’t like the fact that it seems to make me really tired for about one hour out of the 4-5 hours that it gives me relief. Yes constipation is an after effect from almost any pain pill. But my go to relief for that is the Blueberry breakfast or trail bars that my wife picks up at the grocery store. Absolutely perfect and pretty normal with that bar only. None of the other types have that acceptability for me. The Muslic(sp) bars with coffee are also a very good sub if nothing else.
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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
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Inhaling baby powder, which often contains talc, can lead to serious respiratory issues. Talc can be harmless if ingested or applied topically, but inhalation can cause severe consequences. Acute inhalation of talc can lead to a diffuse bronchiolar inflammatory reaction<sup>1</sup>. Chronic inhalation of talc dust, especially in an industrial setting, can lead to a condition known as talcosis, characterized by chronic bronchitis, interstitial fibrosis, and/or granuloma formation<sup>1</sup>.
Excessive inhalation of talc can cause a severe inflammatory reaction that may lead to pneumonitis, an inflammation of the lungs. If the inflammation continues, it can develop into pulmonary fibrosis, a condition where lung damage causes scarring<sup>2</sup>. It’s important to use baby powder judiciously and avoid creating dust that can be inhaled.
If you’re concerned about exposure to baby powder and lung health, it’s best to consult with a healthcare professional for personalized advice and potential screening for lung conditions.”
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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, which is an inflammation of the lungs that can lead to scarring. In one reported case, a patient developed acute respiratory distress with a histological pattern of acute fibrinous and organizing pneumonia after being treated with flecainide<sup>2</sup>. It’s important to note that drug-induced lung injury (DILI) from flecainide is uncommon but often under-recognized, with clinical presentations varying from acute pneumonitis to subacute or chronic manifestations such as interstitial lung disease<sup>3</sup>.
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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 at least 12 years ago as simply “paranchimal scarring”, but nobody really said anything because it wasn’t what they were pursuing at the time or for breathing difficulties I was slowly developing but hadn’t caused any real problems yet. But it did give me a general time area to think about as to what things was I doing at that time and what Rx drugs was I taking, and even an open heart surgery I had. Kind of made me think there could have been a start do to something in that area. So I looked in more detail with no specific findings.
Seems like when it develops enough to become an identifiable problem in itself that a really sharp doctor says “hey, you probably should see a Pulmonologist”. Then the problem seems to be with whether your particular condition fits one of the already defined areas like environmental or Copd or Rheumatoid Arthritis or one of many others and that can qualify for one of the two drugs for IPF or other maladies. Yes they sure do jump on the smoking issues (if I only paid more attention as a kid with my pack rolled up in my t-shirt, yep!) it’s a biggee.
However, I think we are underselling the value of checking our Rx drugs very carefully using some of the new info searches that are using Artificial Intelligence to expand their reach. I use Microsoft’s “COPILOT” I have personally felt very useful to myself in doing my own research and of course the name of the game is to use alternate words or names for your drug/s and include “lung scarring” or “fibrosis” or ILD, or lung disease and be creative and it might just surprise you with some ideas of Drug Induced sources for this scarring. One way for example could be . There is the ‘possibility’ that a drug could be causing some of our problems and in some cases simply stopping the catalyst may be a partial answer although scarring elimination itself is still being worked on at many levels, so meantime maybe just stopping the scarring at the source if possible is a good thought. Of course if a possible answer pops up on that pc it would sure indicate a visit or frank conversation with your Pulmonologist or VA clinic. PS, I am not a professional, just a guy who is unsatisfied with my condition and the answers that too easily put me in an “unknown” source box and it just doesn’t feel right yet and is too big of a box. I also notice that the Forum already indicates a number of drugs that can be issues correlated with Fibrosis.
You know, way back in the Air Force in 1967 on my exit physical a doctor told me I didn’t scar very well (big white collagen marks where I had a few minor surgeries) and it could give me a problem later on. Maybe that was a missed warning that I never thought about till much, much later?
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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 up the only drug OFEV for mine which is IPF but resistive type (harder to inhale than exhale. Didn’t like the sound of the tradeoffs between the meds and not getting 10% extra walking distance in the end, so here I am. Dlco 25% predicted, not great. Oxy has gone from L3 to L5 on portable concentrator, Inogen. Yes breathing more difficult, weakness in arms and legs from a 5 month 25lb weight loss (my wife says coughing cost me the weight) is coming back a bit after light 3# weight lifting and some small stair stepper light exercise. It does help a bit. However I have been “plagued” for almost 2 years with the eternal itch…….. wanted to say something else. Like others we have tried all the creams and about 5 different doctors have said its everything from ezcema, to bug bites before shaking their shoulders and head and saying gosh “I just don’t know”. A more recent Pulmonologist gave me Azythromycin as a prohylactic every couple days against an exacerbation, and after 2 months I decided to quit that this morning on the chance that it makes the itching worse. I have had Gabbapentin and other forms of pain relief suggested but none work. Arms, ankles and feet, thighs, back and sides of rib cage. If I get rid of this then I can tolerate gasping for breath :-), I think. After a wet eye now and then, I smile and say, gosh at least I am still around to read about the advances of a mighty large batch of professionals who are working hard to get us the solutions and not the band aids. Lets do all we can to keep this forum as a destination of known, unknown and wished for solutions since your solution might not be mine and vice versa, but we all need to see them to pass it on too. Maybe a new forum called “Itching”?
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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 for a few moments will kick that ol’ heart rate and O2 into low and high gears rapidly. I have really begun to understand just how my heart and oxygen and breathing are interrelated and usually diametrically opposed to each other (one goes up while the other in my case goes down).
I have been amazed how rock solid my O2 is throughout the nite at about 97/98 when on my At-Home compressor and only a setting of 4, whereas during the day I require always setting 5 on my portable compressor and occasionally setting 6. More impressive is that the manufacturer enabled the Wellvue to call back history from whenever you originally started recording. I can see backwards on the history now for 1 1/2 years by days, weeks etc and it shows some very interesting trends that I don’t personally like but also reflects the end result of even minimal consistent exercise.
For those who use an Apple watch (which I also have), yes it gives a lot of error readings if not kept very still while reading, and I also cover mine with my hand since it operates on led light if I understand it right. It reads by different means than the little finger units so I expect some differences. I do note that my Iwatch will give fairly consistent higher readings while sitting. I think that may be to averaging techniques.. maybe.
BUT…. anyone who is using one the Apple watches has another treat built into the Iphone if not aware of it. In the Apple “Heart” health app it keeps track of heart rates and even oxygen readings from the watch and of course steps and miles and stairs walked each day and lots of other good stuff and gives some very helpful overall history and health info as well. If you are not aware of this info you (anyone) should look for that Heart App and investigate it in detail and be sure your personal physical info age etc, are in there so it can return some pretty useful info on a regular interval. This keeps and displays data by hours/days/weeks/months etc. Look and use this, it helps a lot to stay knowledgeable of your own data in detail because not a lot of other folks (including professional) are always tuned into your own personal knowledge of yourself. I personally have found that having this data available helps me considerably in communicating with an assortment of doctors and others.
Beyond that, I have to rely on a strong desire to somehow last long enough to beat this thing. I will continue to research the internet with new info maybe going to the credit of more efficient programming from the institutions using AI to assist them. I see seemingly new info every time I look and drop in some new keywords for search. I honestly hope that with so many people working on new approaches for so many varieties of this horrible disease that each of us might benefit from FDA and others who can push this process faster to get the pending information to all of us on progress and results. Sharing info thru this forum might just be the one best thing we can do to help ourselves and produce a little bit more hope and motivation when things get a bit dingy. It helps…..
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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 side pressure readings that you are aware of?
General costs?
Thanks
George Poulsen
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Sandra, I may have misinterpreted what you were saying. Did it turn out that you were dealing with COVID and the treatments helped you through it, or are you still dealing with Fibrosis from other causes and the Covid treatment helped to deal with the Fibrosis as well? Sorry if I went off the rails sort of.
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I enjoyed reading your response. Sounds a lot like what I would really love to see happen with my own IPF Resistive issue and would be happy take even a quarter mile a day right now. Also would love to see my DLCO increase even 5% off my current 25%, that would be a good turn around and direction to go.
My rehab from this last stent will begin in a week and I do see some increase in mental acuity, and even physical activity after 4 months now of serious weight, 22#, and muscle loss which I thought was IPF. Now I it feel this has been the heart decline after a heart event that I thought was an exacerbation. Even carefully made it up our stairs yesterday (one step at a time with O2 concentrator – L4) which I haven’t done in 4 months. Never been an athlete and just letting my body tell me when its ready to advance just a tiny bit. However any movement still brings a heavy breathing issue quickly and takes a good 3-4 minutes of no movement at all until it suddenly shifts into a more relaxed mode. Even getting out of the shower is rough and wife helps there. Doc still says get on Ofev, but for my own reasons I’ll still wait for something better and hope I haven’t made a bad mistake. Mind over body may not be a good bet at 83 and not in great physical shape-eh?
I’d be interested to see a bit more of your chronology/timeline of IPF? development. I did all the things growing up that kids did in the 1940/50/60’s etc (Bazooka bubble gum, Tootsie rolls, ice cream sundaes and later steaks etc) and built up that cholesterol. Eventually open heart in my 60’s and a quad bypass and then stents and etc and then breathlessness took me for more heart valve work and stents/recently.
I keep thinking my case is different and caused by one of many surgeries in my life (lungs deflated etc), or from working with cleaning solvents a lot, or a life of allergies and sinus infections that got into the lungs, or even a long life of continuing Gurd with hiatal hernia to boot, or even a low level of Rheumatoid arthritis or certain heart meds which are all documented. But doesn’t everybody do that while in some sort of denial? We tend to look for explanatory reasons that could be one time events that won’t continue every year, before accepting realities. I plateaued for two years and am waiting to see the next set of Pfft tests in February. If by any chance its still plateaued, maybe, just maybe I can turn it around.
Meantime I’ll continue to think that my heart issue was maybe more responsible for my IPF symptoms than I ever thought. I would also encourage people to review carefully their history and whether they have availed themselves of all the medical advice that is available including second opinions which some insurers like to accept.
** We should all stay as informed as possible and support the progress of the research foundations who are working so hard to come up with solutions that could help all of us and PFF is certainly great contributor to this knowledge base.
Seems like a “Life and Breath” matter to me .
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If mine had been looked at a bit differently or by other people/doctors I might have avoided a whole lot of anguish a lot earlier based on experience levels and analytical ability. My doctors have been good people and well qualified, but each kind of looks at things differently, so you just never know. As I said, I still have a progressive disease with no solutions for reversal but I am putting a great deal of faith in our world’s scientific and medical community who seem to be working very hard on solutions. We all just need a bit of time and those taking Ofev and other meds may just get that time before I do :-). Its a choice thing.
Meantime curiosity and layman research can’t hurt and folks should not be afraid to look into other resources if not finding the attention or info being pursued. PFF is one great source too!