Probably also because long-term safety is unknown. Its safety short-term is well-established (outside of people with pulmonary rule-outs), but it’s simply impossible at this point to know what the effects might be decades down the line of regular use. It’s why personally, I’d be hesitant to use it as a primary short-term insulin just yet, vs as an adjunctive one (although I can certainly understand people making other choices after weighing pros/cons for themselves). Pediatric providers are going to be way more cautious on that front, given that their patients have a lot longer to live still, so possible unknown long-term side effects are more concerning. I don’t think it’s about going the easier route, but the safer one.
I primarily use Afrezza for corrections and glycemic meals (such as Thai food). I don’t use it often enough, though, to have a good sense of timing or how many carbs a dose covers. I did self-pay for my 4-unit doses and got samples for the 8s from my doctor’s office.
The host in the podcast, Craig Stubing, does he talk about it in other podcast sessions? Do you follow him on social media?
I’ve never really gotten into the facebook, instagram, or twitter scene. It’d be interesting to see if Afrezza is being talked about there.
Yes he does! And there are three different podcast under the BetaCell umbrella. I really like their outlook and information. He is not as active on social media as
Laura Pavlakovich who I think you related to.
This is what I’m starting with and have a feeling it may be how I end up using it. I would rarely use an 8u so I am splitting them to help me financially.
Rather than safer route, I would guess its more known vs unknown. Afrezza has not been shown to be unsafe.
The dosing difference is the other obstacle. With my pump, I rarely bolus more than 3-4 units for meals. But for higher carb meals, will bolus 1-2 units pump, in addition to 4 unit Afrezza. I have 8 unit Afrezza that I usually split, but on occasion use full 8 when have fast rising BG, with higher carbs “food on board”. Without CGMS, I would not be as aggressive with Afrezza.
It is not covered by my insurance, also obstacle for more usage. But signed up for lower cost program offered this year, but will likely stop once that program ends.
I’m not sure I’m comfortable with characterizing Afrezza as a less safe route either.
Prior to starting Afrezza, my average bg level was 130. Using Afrezza and Tresiba, I had a 90 day average around 118 (prior to starting Metformin). You can see this in my past posts. My time spent in the low range has remained overall consistent, but my A1c dropped .3% which is significant since it was already low when I started. In addition, my standard deviation dropped from around 35-40 (depending on the week) to 30-35.
Given that we have no reason to believe Afrezza should cause problems, I feel that I’m much safer taking Afrezza.
Yes, I should rephrase, it’s the more conservative route re: safety concerns.
And while I agree there’s no specific reason to think it causes problems, there’s also no reason to assume inhaling insulin is safe for the long-term either, so it is a risk trade-off. And if it’s a useful way to obtain significantly better control, I’d agree that I’d think it’s most likely a worthwhile risk for that person.
I think Afrezza’s action profile allows for better control with less effort as well. We all make lots of adjustments in our lives to stay in range so that we can feel good and reduce our risk of developing complications.
We have no reason to believe that Afrezza will cause long-term problems, but we know that it can help significantly balance the time spent managing diabetes and living the rest of our lives. Maybe not for everyone, but I know it did for me.
While there’s a risk/reward for most things diabetes, the long-term risk is not measurable for this one. So I suppose for me, there are lots of other risks out there that are known and tangible. Afrezza helps me minimize those and allows me to focus my mind on other things.
I agree 100%. After 50 years of multiple tools , it is all a risk and trial and error. The safety issue of Afreeza has not concerned me.
Thank you. Very helpful!
Dexcom is pivotal for me in regards to all aspects of my management.
Well said. That’s my goal.
Update- So far it is going very well and improving as I am learning! I am very happy with the results I am getting. In the middle of the process of approvals, auths, appeals,cash pay program help. I am holding back my excitement with how well it is working for me because of this unknown.
Again, I think that makes perfect sense! It’s probably the same way I’d think about it for the most part. My main point was that my experience, pediatric providers often tend to weigh unknown longterm risk much more heavily than most of us would (whether that’s a helpful decision or not).
To clarify this. This was in reference to providers and insurance coverage etc. There are a wide array of endos out there and each is more open to doing things out of their own box than others. There are some who will only prescribe Medtronic pumps and you need to fight for a Tandem etc. I’m sure safety especially for peds, the unknown and the easier way all play into it differently. I tend to lean towards the unknown. It would take time on their part to learn about using Afrezza and it is very reliant on each individuals trial and error for dosing. This makes many providers uncomfortable.
It’ll be interesting to see how FDA approval of Afrezza for children or teens (should that occur) impacts endocrinologists’ perception of Afrezza (pediatric or otherwise).
Somehow I missed that your original comment was directed at pediatric endocrinologists. Sorry I belaboured my point a bit unnecessarily.
No no. I was not clear lol
I see why this happens. It is so amazing and helpful in treating a aspect of my control that before, with lots of effort, had not been possible. It’s like the missing piece. Now my only hope is that it can gain users and improve ways to pay for it so that we don’t need to give it up.
I was on afrezza for about a year, but eventually switched jobs and it was no longer covered, however, after my lung test decreased a little (100% to 85%) after 6 months, I used it a lit less, now they are expired, so ive stopped, but the most important tip I can offer is to so the diabetic math properly. I found a 4 unit would bring me down 50-80 mg/DL usually depending on activities, and an 8 would bring me down 100 mg/DL unless I waited too long after eating, in which case more was needed to bring it down. I liked afrezza because it was fast, and left my system 60 to 90 minutes after, which is much beter than my 3 and 6 hour peaks on humalog now, but I could either get 12 and 8 or 8 and 4, they would not give me 12, 8, and 4, and I refused to pay an additional city pay for just 4’s. You’ll probably have a similar issue, just make sure the doctor prescribes enough for your largest carb meal and corrections and they to go through your 90 day pharmacy if possible… you’ll also end up with extra ice packs…
Thank you for your dosing and prescription input. I am still in the middle of trying to sort that all out. I mainly use 4’s and am dividing the 8’s so that should help me out financially while I try to get coverage. Do you miss it? Would you start using it again if you were covered?
This is a little unsettling. Did they attribute that to Afrezza?
I am finding that after I inhale a dose there is powder left in the little holder. If I push it back to the top and inhale again I am able to use the total dose. Am I doing something wrong?
When I dose with Afrezza, I take a long deep breath - not a big inhale, but a long, drawn out inhale. Then I hold my breath for a second before breathing out. If I don’t hold my breath for a second, then I’ll exhale some of the powder.
I think inhaling over a longer period of time is more helpful than inhaling deeply at all at once. I’m also more likely to cough if I inhale deeply.
I haven’t really had problems with leftover powder in the cartridge. Sorry I can’t help more with that.
Did your doctor comment on this? That is concerning.
I did a spirometry test around 9 months after starting (and when I started), and I remained in range for my age. This test was discussed in this thread:
I wasn’t thrilled that the test is pretty wishy washy and doesn’t seem to prove much other than that your lung function isn’t compromised. Not a really valuable tool IMO.