Good for you, Mike! I've been calling my doctor's office to get lined up with an Afrezza supply. She's been on vacation but returns tomorrow.
I look forward to reading about your experience. It'll be nice to talk about data for a change, instead of speculation! Good luck with your first dose.
How do you dose with Afrezza? If you have an insulin to carb ratio of 1 to 10, are you using more insulin with Afrezza? Are you using less? I'm not even sure the ratios will be the same. And who are the endos who know how to use it and will prescribe it? It's out there but still hard to get.
Thank you, Terry. Her endo won't prescribe and they won't prescribe for adult patients either. I don't even know if she has looked at the data that is out there on Afrezza. Ten years of being high two to three hours after every meal and every snack certainly can take more of a toll on her body than what most experience, which is a cough which clears up after a few months. I would much prefer they have a fast acting injectable so there can be no possible lung involvement, but it will be awhile before that happens. There was a drug in research called Linjetta (sic). I think it's safer to have insulin quickly in and out of the system, most especially before bed time.
Please report back. Is the dosing equivalent? In other words, if your ICR is 1 to 10, would you dose the 4 unit cartridge for 40 grams, the 8 unit cartridge for 80 grams, etc? When they say dosing doesn't matter, per se, does this mean you can use a 4 unit cartridge for 50 or 60 grams? Does insurance cover this or do you have to pay out of pocket?
You’re entirely right Dave. And unfortunately I’m not an expert in such things. I wish though, as a non expert, but an advocate (and investor) in this treatment that they would simply call the doses something other than “units” because it seems to me that the insulin dependent community seems to overwhelmingly have a predetermined sense of exactly what that term means and very little willingness to think outside the box they’ve been forced to learn and live by so rigidly thus far…
Jan - If Afrezza can deliver on its promise without too many side-effects then I think some doctors that initially take a wait and see attitude will jump in and prescribe. I suspect that there are some key doctors that heavily influence what other doctors do. Once these "heavy influence" doctors start to prescribe it to their patients then it will become more available.
I intend to try it as soon as possible.
That being said, I don’t discount their skepticism-- it is valid. I respect their concerns… I just hope that a lot of those concerns are eventually alleviated and this makes some peoples lives easier
If I pre-bolus I go low after meal sometimes. It helps if I have some hi glycemic food. So my plan is Affreza after eating and after cgm shows rising BG. Invokana is the first regulating drug. It stops lowering BG when BG is "normal". Affreza could be scary lowering BG too fast. But for a stress hi its the ticket. For an unexpected hi. We, with active work/exercise that is not "regular" as in "regular exercise". So, what does Affreza cost you? Do report even if its nothing noteworthy. With Invokana I saw a CGM change. Then the doc saw a lower overall in the graphs.Now I'm not even getting a regular sleep schedule.
First bolus last night with Afrezza and it went very well. No post meal spike at all. I inhaled the Afrezza right as I was taking my first bite of my sandwich. I tried to keep everything as simple as possible for the first dose. I/C ratio on pump is 1/12 and I ate approximately 90 grams of carbs so I inhaled 2 4u cartridges. Blood sugar was 123 pre-meal. Was 91 an hour after I ate (with no spike). At the 2 hour mark I had creeped up to 144, BUT I made a carb mis-calculation which I attribute to causing the rise.
Of note: On my Omnipod I always bolus right as I begin to eat so the time of dose is consistent. Normally, I'd see a pretty big post meal spike in the 30-45 minute range on SubQ insulin. I did not see that with the Afrezza dose, so I can confidently say it works quickly.
I plan to experiment a lot with the Afrezza. One thing I will do in the next day or two is eat the exact same meal both days and one day use Afrezza and the other day use SubQ insulin via my Omnipod and chart the differences using my CGM.
I'll try to answer a couple other questions:
@Jan - I've only dosed for one meal and I tried to keep the carbs pretty close to the dose, although as mentioned above it seems I under dosed a bit. I plan to experiment with the dosing and the correlating impact. I will probably do this at lunch today.
@Jan & @Aaron Insurance does cover my Afrezza. I have a co-pay of $90 for a 90-day supply.
Would you be interested in starting a new thread in the forum to document your experiences with afrezza over a few days as one of the earliest users? That’d seperate the real observations from all the debate…
sure, be happy to.
Just let me know where best to do it.Right in the main forum... https://forum.tudiabetes.org then the "+ADD" icon is above the existing discussion threads
Good idea, Sam.
Mike - just go to the TuD home page and click on the "+ Add a Discussion" link below the 4th of 4 top forum discussions. The main forum gets more traffic than any of the subgroups. Since Afrezza is a new treatment it has a lot of general interest.
done. thanks for the suggestion.
Good deal, a lot of us will be reading it with great interest
I’ll be asking for Afrezza in March. I need as little tail as possible when I bolus so fingers crossed I can try it and it works for me.
afrezzauser (Sam) just took 4 units of Afrezza with a normal blood sugar to test for hypos. He did not eat any carbohydrate. He does have a cgms and his correction factor (from what I ascertain from reading his blog) is 1 to 50. His blood sugar only went to 58 and stayed there. Sam loves to demonstrate Afrezza's capabilities and I am fascinated watching him do so. Clearly, Afrezza does not behave in any way like injected insulin. However, with a correction factor of 1 to 70, sometimes 1 to 100 still not clear if our DD will be able to correct on a four unit dose. Hope, hope, hope Afrezza makes a 2 unit dose. I suspect if a lot of diabetics use Afrezza, it will be cost-effective for them to do so.
The issue isn't that Afrezza doesn't behave like subcutaneously injected insulin, but rather that the body doesn't behave the same way in its presence. Afrezza allows the body to function much closer to how a healthy individual would, with a surge of insulin available quickly in the bloodstream that the liver can clear once it's not longer needed. In the Afrezza thread, Dave has offered a nuanced and plausible explanation of how Afrezza works in conjunction with the body to produce the effects that it does. And for what it's worth, intraveneously injected insulin should function much the same way, perhaps even more so. So think of Afrezza as a substitute for IV insulin, without the risks and challenges of IV insulin (though perhaps with some different risks, to be determined down the road).
Called Sanofi today. They won't give me list of endos so I will have to research myself. If you pay out of pocket it's about $360 a month for their packet of 4 and 8 unit cartridges. Sanofi will cover up to $1,800 per patient on their savings card. So about $150 a month. That's with no insurance coverage at all. It may be a while before most insurance will cover this.
Only one way to find out if 4u would be too much for her, try it in carefully controlled situations to see how it goes…