I read these posts. I was dx 2 years ago at the age of 56. Ironically, heart disease and diabetes research is my field. So I research diabetes and treatment for diabetes. This site is very respectable. The folks who post are knowledgeable. Why are there so few people who use Afrezza? I don’t get it. T1D did not complement my life and does not complement anyone’s life.
I used MDI, then the pump, then back to MDI with several different insulins. Now I use Afrezza and twice Daily Levemir. This last regimen has been very successful. I don’t need to plan meals or pre-bolus.
Before T1D I had been going mostly whole grain with vegetables and fruits. Meat, eggs and cheese was gagging me. After dx I went HFLC and managed sugars well. But HFLC gags me.
With Afrezza my meals are whatever and whenever. Breakfast commonly is coffee with cream and honey and an apple. Since Afrezza I am back to my pre-dx meal of whatever produce is in season. I am an organic produce farmer. It is late fall. Winter squash is in season and it is high carb. It is part of my diet and Afrezza handles it well.
Afrezza has managed my blood sugars well. Suddenly I feel good and have energy. For ten years I have had head fog and felt sloggish. Now i feel that only when my blood sugar is high.
I know health insurance dictates, unjustly, what treatment is available to us. I had to push my endocrinologist for nearly a year get her to rx Afrezza. Once prescribed, insurance is another hurdle. The struggle was worth it.
Sounds like we have similarities…I was diagnosed at age 57 (3 yrs ago). I choose not to use Afrezza because I’m doing OK with MDI and a CGM. I am retired which makes it easier to fit MDI into my lifestyle. Pre-bolus for meals and correction bolus for highs is not a big problem for me. I’d rather not have one more thing to deal with. I have a similar attitude about pumping. I can keep my A1c in a decent range with MDI and don’t see the need to introduce any more insulins/technology.
Also I play ice hockey and hike, bike, etc. to stay sane and in shape and don’t want to risk my lung capacity. I just don’t believe it’s been around long enough or heavily used enough to convince me there’s no risk. If I felt like I really needed it I might be OK with that, but for me the reward would have to outweigh the (unknown) risk of inhaling insulin.
If I was still working I might sing a different tune. I can understand the BG control benefit provided by Afrezza compared to MDI but don’t feel like I need that benefit at this time.
I will tell you that here three and a half years after being approved by the FDA Afrezza is still not on many of the Aetna formularies even though it is the only drug in it’s class (inhaled insulin). It is on my formulary, but as a Tier 3 which costs $200/month co-pay. Tresiba, which was approved after Afrezza is Tier 2.
I suspect that insurance companies are just dragging their feet, making the argument that Afrezza is just like rapid insulin (i.e. Humalog) and that we need more “studies” to prove it is superior. They may also be arguing that Afrezza is a convenience. And I would not be surprised if the delay is due to the breakdown of the Afrezza/Sanofi deal and the inability of Aetna and is PBM to negotiate “kickbacks” with Mannkind.
I paid out-of-pocket to try Afrezza and would have continued to do so if I thought it was a step up for me. It wasn’t, so I quit after the first order.
The first thing I found was that I needed to take a LOT more Afrezza than my normal rapid-acting insulin. So expense would have been significant. Or trying to get insurance to cover that large an order would have been difficult. I also had some mild throat irritation, but I would have tried to work through that, other things being equal. YouTube videos show people doing an “Afrezza Challenge,” drinking a Coke or taking straight glucose. But even a bowl of non-sugared cereal was a challenge for me.
The second thing I found is that, depending on meal composition, I would need to come back some hours later and do a touch-up. That’s really an inconvenience during a busy day.
For now, my solution is low-carb meals, along with a modest pre-bolusing of insulin. It is infrequent that I have to do a touch-up bolus later. That yielded a 25 lb. weight loss and my best A1c in years.
Yes, low-carb can be boring and limited, but people out their are creating quite varied ketogenic meals that are quite satisfying. And while I’m not aiming to be in ketosis, I find using some of the recipes immensely helpful.
I went straight to Afrezza + Tresiba + CGM last year when I finally needed to add a mealtime bolus to my previous basal-only regimen. It was an afterthought by my endo, but seemed a good fit. Insurance can definitely be an issue… I was covered at first, but moving onto Medicare left my drug plan only covering 50%, so definitely an out-of-pocket cost.
I have always had the stereotype, that prime market for Afrezza is older recently diagnosed adults who are adverse to needles.
Obviously I’m set in my ways, but I’m already carrying around insulin and needles for the past 35 years, I’m not about to add an inhaler. To me that would seem like a step backwards, not a step forwards.
I think this may miss the point that Afrezza is so fast acting (both in its onset and short duration) that it’s completely different from any injectable insulins. I have no problems with shots (been doing them for over 25 years), and if a similarly fast insulin to Afrezza could also be taken subcutaneously, I might take a pen over an inhaler too, but it probably never will, because the delivery mechanism is a huge part of Afrezza’s speed. To get similar speeds via injection, you’d have to inject IV.
That said, I think one reason many people might hesitate to use Afrezza primarily for short-acting insulin is that no one knows yet what the effects of longterm inhaled insulin use really will be. I’m currently trying to get approval to use it, but plan to use it only as a supplement for the occasional meal when I haven’t been able to prebolus or am having unusual amounts of carbs or for corrections. I personally would not be as comfortable using it as my go to insulin.
I think you answered your own question there pretty succinctly, at least as it relates to me. Lack of knowledge on the part of physicians, and lack of willingness to pay on the part of insurance companies.
I live in a rural area of the US (even though I work at a research center), and there are three endocrinologists active in the entire state. I was diagnosed as an adult, and my PCP told me “there is no such thing as adults who get Type 1.” Had to find new doctors, etc. Took about a year to get an appointment with an actual endocrinologist, and she made it quite clear: as long as my BGs are approximately normal using Type 2 treatment options (orals, diet changes), she doesn’t even want to waste time on me as a patient.
I’ve been told my treatment options would be different if I lived in a city. Even though I’m diagnosed as LADA (through positive antibody tests), I can’t even get a doctor to consider treating me any differently than a Type 2. So, I’m left with low-carb diets and metformin, which mostly work quite well. But Afrezza isn’t even an option, since I’d have to go to war with my medical team to even get an insulin prescription at this point…
The idea of inhaling any type of insulin is repugnant to me. I cough enough when I have to use Albuterol.
Besides, why would I complicate my regimen further? I have Humalog in my pump for both basal and boluses. it works. I don’t follow the logic of “I don’t get it” in the title of the OP’s post. There are a number of ways to manage one’s bg’s. Saying “I don’t get it” is like saying anyone not using what I use is clueless.
Having said that, I’m glad it works for YOU. that’s all that should matter, right? I like pumping, but I also know about the many cons of pumping and therefore fully appreciate that not everyone wants to pump. Or not everyone wants to pump with a tube pump. Some folks, due to lack of insurance find the cost of pumping prohibitive. There are a myriad of reasons why each of us chooses our particular method of dealing with diabetes.
For me personally, I prefer a pump for its exact insulin measurements. My meals and corrections almost never fall into 4 unit increments. Plus the hassle of carrying around several different cartridges. N0o thanks. But mostly because of the 4 unit limitation. Wouldnt work for me at all.
Clinicians, as a group, are very slow to change. On top of that, I don’t think they truly listen to their patients. To be fair, their workday experience is time-constrained and hectic. We all know the nuisance that payers can exact on us; they do the same thing and more to our doctors.
Doctors exhibit strong herd tendencies. If they have the cover of a majority of their peers, they feel less risk. Those of us who take insulin recognize how potent of a tool it is. We also know how dangerous it can be. Can you imagine how frightening this can be for a medical doctor to grant us full authority to make insulin decisions? While I don’t think they have any other option to prescribing insulin, the scary factor remains.
I do think that clinicians should show more respect to their patients. We live with this disease 8,760 hours per year. Our experience soon dwarfs the professional hours of a doctor’s training and practice. That time does count for something. It does not, however, replace the training of a medical doctor.
But it does count for something. I no longer look to my doctor for any insulin dosing advice.
I’ve been fortunate to have had some good endocrinologists in recent years. When I started with the doctor who prescribed Afrezza to me, I asked her what her position was on Afrezza. This was a full year or more before it became available. She said she was hopeful about it and would likely prescribe it when it became available. If she was negative at that point, I may have looked for another endo.
Dosing is not limited to 4 units. Cartridges come in 4, 8, and 12 units, and you can take whatever combo you require.
One advantage of Afrezza (which I’m not using, by the way) is that it starts to work within minutes and peaks in about 15 minutes, long before the hour or two a fast-acting insulin like Humalog takes to really hit its peak power. Also, many users find that after taking Afrezza, their BGs magically level out at their target. I’m not sure anyone understands how it does that, but it has been frequently reported. This apparent speed and efficiency has its appeal to some of us who have corrected and corrected and corrected and that stubborn high still doesn’t budge.
Afrezza works differently, and the 4, 8, 12 (sm, med, lg) doses are only similar to dosing with other insulin, not the same. Once I started, I immediately brought my A1C down from 8.1 to 6.1. Perhaps if your goal is much much tighter (low 5’s) it might not work as well. Since it is very fast acting, I think timing is more important than actual dosing. I do sometimes have to take an additional dose an hour later if the carb content of the meal was low.
As far as carrying it around… very simple. The little plastic inhaler and a set of 3 cartridges easily fit in a small (3"x5") coin pouch in my pocket. I rarely use anything but 4u cartridges.
I also find it frustrating that the new drugs and technology that comes on line, is very slow to be used by all of us. I must say the past few years, the items coming available for us has been a lot.
Afreeza is one that has been around for a few years but not well know or used. For many insurance is the stumbling block. And for many, if years, have used CGM’s on and off for years but using a Dexcom continuously for about 4 years now. And I just got my prescription for Afreeza last week. I am pretty insulin sensitive so I don’t use a lot of it and haven’t used it for meals yet. But I have for those stubborn highs that the pump just takes forever to bring down. I love it for those highs! I can watch the CGM do the double arrow down,(which can be scary at first) and it pulls into target range and levels out. No long tail. In and out and the high is taken care of. So I have my inhaler in my meter case with a few cartridges and I have another tool in my diabetes kit. I figure if it’s been out for awhile and people have worked out the kinks, I am on board to try anything to help make things easier. It may not be for everyone, but I am always willing to try anything to help make this disease a little easier!
I don’t want an insulin working as fast as you mentioned. that could be pretty problematic for me. And again I do not want to inhale any type of medication
Yeah working that fast could be a huge problem for some especially those with digestive issues. I would love it for meal doses because you don’t have to pre-bolus. Inhale & eat. No more waiting 15 or 30 or sometimes 45 minutes before eating! But as always a YDMV and everyone’s usually does vary😊
John - congrats on the early retirement! I retire the first of the year and can taste the excitement!
Like you I bike, hike, etc. Played ice hockey for about ten years. Now I’m planning a hockey rink on my property for myself and to teach my grandson.
The pump was a pain in the rear. Tubing and the set always getting in the way. It had and has it’s uses. I plugged back in for a few weeks when I was fine-tuning Afrezza. The set irritates my skin and the sites take forever to heal. It won’t let me use it to deliver bolus doses only. It insists on delivering basal as well. I can’t sleep with that crap hanging off my body so I was using Tresiba (and now Levemir) as basal. During the fine-tune period I kept the pump in a water-proof box so I wouldn’t hear the annoying beeps and took it out for the micro-bolus doses I needed.
Recently I learned how to open the Afrezza cartridges and make smaller doses for minor corrections. I am very sensitive to high blood sugars. Even 150 gives me head fog and makes me crabby. Waiting for “fast-acting” Novolog to work had been killing me. Afrezza works so quickly I’ve been able to keep my sugars well below 150… most of the time. ■■■■ happens. But for the first time in many years… I feel so damn good. I have energy again. I’m not crabby. I nearly cried when I realized why I had been feeling so awful for many years and that the fix was so dog gone difficult to obtain. I was symptomatic of T1D for many years before dx but who would have figured to check an A1c? I had a doctor tell me “you must be very sensitive”. Ah god help me. An extended illness with Lymes disease pushed my pancreas over the edge and… diagnosis.
As far as inhaling insulin. The crap in the air we breathe now is probably much worse. I inhaled a few things in my youth so if there’s damage to my lungs it’s not from Afrezza. I’ve become a bit cynical after the D dx. Most of my adult life I was the champion at gatherings for bringing the best grilled vegetable dish - organic of course. I ate organic and for the last 5 years have grown most of my own organic fruit and vegetables. I’ve been physically active and fit. No one in my entire, very large, extended family has either T2 or T1. And of all the people to become T1D… WTF?
Inhaling Afrezza while driving is much easier to do then taking a Novolg injection… hold that needle still for a minimum of ten seconds so the insulin can slowly dribble under the skin. Bruising while driving.
I still eat relatively low carb, similar to my pre-D dx, so I don’t need to inhale a lot of insulin. I’ve been using the 8 unit cartridges to divide into 4-2 unit cartridges. Afrezza units do not correlate to the similar Novolog units. An 8 unit Afrezza for me equals about 5 units of Novolog and 4 units Afrezza is about 2.5 units Novolog. So the 2 units Afrezza I am making take me down about 50 mg/dl. I’ve got Afrezza dialed in decently now but still carry a Novolog pen just in case. Certain foods will require a correction a few hours after consumption, but I don’t eat those foods often… but I did today.
Anyway, I appreciate your input. We all deal with D, and respond to treatment for D so differently. I am not at all happy to have D, but at least I’ve found something that works better for me than all the other treatments I’ve tried.
Yeah. “Fasting acting” insulin. Huh? Four hours is fast? Afrezza works in minutes. High blood sugar kills. Slowly. Insidiously. Every time your blood sugar is high it is damaging every element of your body. And let’s wait four hours to see if the dose of Novolog you took will bring it down.
