Thanks CatLady. Sam’s video link also discussed the inhale learning curve. It’s nice to know what to expect! Since it leaves your system so quickly, do you sometimes have to do another dose 1-1.5 hours later if you ate a high protein/high fat meal? Do you know if there’s a limit to the number of doses you can do within a certain amount of time?
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Thousands of people have been using it for years now and I don’t see anyone dropping off like flies with lung cancer… there is no way those two people developed lung cancer in that time frame of the afrezza trials—- they had it before the trial started imo—- I haven’t watched the video in a long time but I suspect they just glossed over it because it’s not particularly relevant
Eta I’ve “read on the internet” that both were Eastern Europeans who had previously smoked for decades and had spent their careers in a metal smelting plant for many years in under developed countries —- I dunno if that’s true or not—- I just know the experts consider it not meaningful…
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My endo insisted I have the comprehensive breathing test because of my history of asthma.
Turns out that my asthma was an absolute contra indication for Afrezza.
And I think the doc was correct, given the temperature related series of bronchospasms I’ve experienced in the last week. Damn, I hate the cold weather.
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This is good to know. Did you pass the spirometry test? I had asthma when I was very young, so I want to make sure I get the right test.
No, but I didn’t take the FEV-1 test, I did the more comprehensive breathing test. And I failed that with the profile of an inhaled corticosteroid controlled asthmatic.
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I feel like there’s an inverse problem though. Since it can take years for lung cancer to develop, they can’t say conclusively until that much time has passed- which is likely why the Afrezza package insert states, “Two additional cases of lung cancer (squamous cell) occurred in non-smokers exposed to AFREZZA and were reported by investigators after clinical trial completion. These data are insufficient to determine whether AFREZZA has an effect on lung or respiratory tract tumors.” Also, “In studies of AFREZZA in people with diabetes, lung cancer occurred in a few more people who were taking AFREZZA than in people who were taking other diabetes medications. There were too few cases to know if lung cancer was related to AFREZZA.”
There’s probably no point in worrying about it though 
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I’m sorry you can’t use it! I can see why your doctor ordered the more expensive test.
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During your big elaborate test, one part of it was an fev1… although the fev1 as a stand-alone can be done without all the elaborate equipment or a highly trained technician…
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I think you are right: imho the biggest long-term concern is the consequences of inhalable particles into your lungs, and we won’t know for another 10-15 years. Of course, in the long term we are all dead!
But I should mention that the story of these two cases has been the subject of a furious debate, and that many people deny the likelihood of a link and question how the statistical link was made.
Perhaps. But throughout the whole test I was in a closed, pressurized booth and had a fairly sophisticated apparatus to breath into, with varying degrees of resistance being applied through the device.
I wasn’t asked to breath into one of those plastic tubes that has a ball attached.
Well, then. It was obviously not a good test in that case
Kidding aside, here is a typical meter for the FEV-1 test (Vitalograph Asma1):
This is the meter that Mannkind lends endo clinics for FEV-1 tests.
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I had the full pulmonary testing done and confirmed that one of them was indeed the FEV1, just done with fancier equipment. Was there one where you had to exhale both hard and fast to your fullest capacity after a deep breath? If so, that’s the FEV1, even if into a machine. You also get a lot more other metrics about lung capacity and function and strength.
I agreed to get mine done because it was the past of least resistance, covered by insurance, and because I have been symptoms of an allergy-like syndrome (mast cell activation disorder) that felt like they might be affecting respiration. I was even having them the day of my appt, so I was surprised to find that I have above average lung function—was good to know that whatever symptoms I’m having feel uncomfortable but are apparently not inhibiting functioning, so I’ve decided to go forward with my plan to try Afrezza. It may be delayed a few months until I switch insurance plans though.
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I agree with this point—while Afrezza clearly isn’t causing any major immediate problems, it’s definitely way too soon to know what decades of use might do to lung tissue. I’ve decided that I want to have it in my toolbox, but I also want to use it relatively sparingly, not as my go to short-acting, as a kind of middle ground approach to balancing possible risk with improvements in control.
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Yes. That was done about four or five times, both before and after the administration of albuterol. There were also several hard and fast exhales against varying degrees of resistance, including 100% resistance.
It was truly an exhausting hour.
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Yeah my tech was saying they like to have you repeat a few times in order to be sure they get a good reading, and my guess from what he said is that that is more true if your reading is not great (they want to confirm that’s the best you can do).
My connective tissue thing means all my joints tend to sublux really easily, so while I felt ok otherwise after testing (probably thanks to not having pulmonary issues), thankfully I had a physical therapy session scheduled the next day, since apparently I’d subluxed all of my ribs doing it. My PT was like… wtf did you do… haha. (She readjusted them—she’s specially trained in this kind of thing.)
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My fev1 actually increased slightly after I started using afrezza… although the first test was done on the big elaborate suite of equipment and the follow up on a cheapo handheld like michel posted above… so I’ve concluded that if I use afrezza enough I’ll actually continue to increase my lung capacity until eventually I’ll be able to spend hours at great depths underwater like a whale.
Kidding about the last part of course… but I’ve talked to many others and have never seen one appreciable change in lung capacity after initiating afrezza… about half of us have noted slight increases, all within the margins of accuracies of the test… the fev1 is not a super precise test and can be affected by a number of factors—- especially how hard you try…
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If it took a full hour they might be right in not allowing you the afrezza … the tech explained to me that people that don’t have any issues can be pushed through the proccess in as little as 10-15 minutes for he “full pulmonary function test with dlco” or whatever it is… they said “the people with issues take longer so they book the room for a full hour” they also said that the majority of people they’re doing these exams on are senior citizens and many struggle with following the instructions (not sure if that applies to you;)
In contrast, the fev1 as a sole test takes exaxtly one second… and I think good practice is to do it 2-3 times and count the best one… but if the first one is fine why repeat…
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That’s consistent with my experience—took about 15 minutes.
@Sam I am indeed a senior citizen, and my wife tells me that I have great difficulty following her instructions.
But I don’t know if those two statements are related 
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Did you demand a discount?