Ah Terry. It is so true that clinicians are slow to change. I am with you on handling your own insulin dosage. I am in a unique situation with my endocrinologist. I worked with her in a professional capacity prior to dx. This is a public university and this MD is a top researcher in the field. Neither she, nor the entire endo group, have any patients using Afrezza. I am the first. I pushed with her and with insurance. She finally agreed to rx and asked me to share my experience. I don’t understand why an endocrinologist would have so little interest in a new treatment for T1D. In order to get the rx I had to have the pulmonary test and visit a diabetes educator. The educator referred me to YouTube to learn how to inhale. I taught her about Afrezza.
After dx, using an insulin pump was encouraged. Between the pump and CGM I have collections after me. If I had known about Afrezza after dx, I would be fine financially. Costs associated with the pump were never discussed. The CGM is valuable and I will never go without it. I feel differently about the pump. I wonder if it took physicians a long time to be onboard with the pump…
Afrezza is Tier 3 on my formulary as well. There is a card on the MannKind website I used so the rx cost was only $15. Even if I had to pay the full $75 for Tier 3 I would still make out better financially than I did with the pump, pump supplies and insulin. At $15/rx, I am happy.
I think a lot depended on whether your doctor embraced technology and put people on pumps. I tended to see doctors who were in a major metro area and often were affiliated with prestigious university medical centers.
After I was on a pump starting in 1987, I did not see any endos who did not have pump experience. This was a basic requirement for me – even if it was just a comfort level with writing scripts for pump supplies. This meant I only saw endocrinologists, a small subset of doctors.
I think most general practitioners did not prescribe pumps even though primary care physicians took care of many people with diabetes, usually type 2.
Afrezza works differently than Humalog. The dose of humalog does not correlate to the dose of Afrezza. Your physician would rx the amount of insulin that you need, so the overall size of the order is not pertinent. Using Afrezza definitely is a different treatment then “fast-acting” insulin and takes a bit of trial and error.
It sounds like your carb intake (cereal) is challenging under any circumstance. YouTube… whatever. No one needs to drink Coke no matter their health.
Thanks for your thoughtful comments. When I did my trial of Afrezza, I had studied it for a long time. I had no trouble getting the prescription, but Medicare was another issue. I paid out-of-pocket for my trial. I don’t believe the coupons on the Afrezza website can be used by those on Medicare. But I could be wrong on that.
I am well aware that Afrezza doses are different than insulin doses. I had studied this for almost a year before I tried it.
I was not advocating a “Coke Diet.” That was a one-time experiment by a YouTube poster to show what a miracle Afrezza was. My own experiments were far more modest, but failed to give me consistent results even at doses of 16 units. A test breakfast of 3/4 cup of unsweetened bran flakes didn’t seem like a huge challenge. If I was going to make this significant change to Afrezza, I wanted it to see some significant ability to handle more carbs.
Earlier, you characterized LCHF as a very restricted diet. And if you stick to meat, eggs and cheese, it is. But many on a ketogenic diet enjoy a much greater variety on less carbs than I am trying for.
I’m not knocking anyone who is using Afrezza and making it work for them. For me it would be a big change and insurance hassle for very modest gains.
I was around for testing of some early insulin pumps. By no means was I the first (those were the size of a backpack!), but in the trial I was involved in, it was like the size of a small shoebox and dosing rate was not set by a computer screen, it was set by turning an adjustment screw. Pumps have come a long way and the ones today look nothing like the first ones!!!
506 was my first, quickly followed by an upgrade within a couple of months to the 507c. Actually what happened was MiniMed shipped me the 506 and about two weeks later the 507 came on the market and they wouldn’t admit that they shouldn’t have shipped out the older model so I argued with them over the course of at least a month and finally they agreed to upgrade me for free to the 507
I think it’s still not covered well maybe by many ins and it’s way too expensive. That prolly affects a lot of people’s decisions. I have asthma and I wouldn’t use it anyway due to the possible damage to lungs etc. No one knows for sure over time what the effects will be. For me the pump is the only way to go and gives me the best control I can get.
I am insulin sensitive too, Sally. I had planned to use Afrezza as you described your use. Not necessarily for meals, but to bring down a high. At first, I over-reacted to the double-down arrows and over corrected so went high again… argh. I think all diabetics should have Afrezza in their tool box for high blood sugars. We have glucogon for lows. Now I use Afrezza for meals and corrections. I still carry a pen, but haven’t had to use it.
My skin does not tolerate the pump site well. Maybe that is common, but I don’t have enough D experience to say. I have trouble sleeping, and my pump is tethered to the site so I have trouble with the tubing and the pump itself. It was very freeing to put that damn thing aside and go back to MDI. But MDI cannot accommodate micro-dosing like the pump so my blood sugar was not as well controlled as I need it to be. A high of 150 makes me feel horrible. A bit of experimenting with different treatments and as of right now, twice daily levemir and Afrezza for meals and corrections is the ticket. My blood sugar rarely goes above 150.
I learned how to split the cartridges into 2 unit dosages so I use those for corrections or snacks. Because I am insulin sensitive and my diet is relatively low carb, I don’t need to inhale insulin often. But it is the coolest thing to go to bed with a reading of 89 and wake up with a similar reading.
I have a lot of pump supplies and insulin so I will use the pump over the holidays for follow-up dosing. It works well for certain carb/protein and fat meals when afrezza takes care of the initial rise and then “fast-acting” Novolog kicks in two hours later for the follow-up rise.
Oh good god. But for the time, that “shoebox” was an advancement. I am in awe of people like you and others who dealt with this disease in the years before the home blood sugar meters and disposable pen needles.
I agree with Dave44, why complicate my daily diabetes drill with an inhaled insulin that does not have a lot of history behind it? I do well with my pump and cgm. I am also an endurance cyclist so I am not about to risk my lung capacity on the inhaled insulin. It’s bad enough when I get sick and can’t stop coughing and then if I had to inhale an insulin that thought is inconceivable to me.
Fast action could be problematic for me on the bike if I have to eat carbs to sustain my rides. It’s easier to under dose and correct when I get home. Depending on how fast and how long my rides are I can swing 100 points. (I ride an averge of 30-100 miles per bike ride.)
Also, using an inhaled insulin really is not a license to eat whatever whenever you want. Some diabetics will do that I am sure, but that carries its own risks for diabetes management.
Lauri your original post has me just shaking my head. I’m glad Afrezza works for you. I have great insurance and can get Afrezza if I want it, but I see no need to use it at this time when my current regime works for me and my medical team.
Let’s all remember that there is no “one right way” to treat diabetes. I’m thankful that there are more choices today than when I was diagnosed T1D in 1984. Back then I used syringes and vials of Regular and NPH insulins. I tested with a visually read blood glucose test strip, Chemstrip BG. I’ve experimented with many treatments that I eventually adopted and some that have gone by the wayside.
Sharing our stories here can help people considering another treatment option. There’s a hazard of us generalizing our personal experience to bestow some universal meaning. I see participating in a community like TuD as a way to create an ongoing “menu” of treatment options from which I can try myself and decide if it works for me.
Everything is not so crystal clear. Just because insulin-sensitivity enhancing orals are helpful doesn’t mean Type 2 is required. Just because auto-immune attack on beta cells and low insulin production results, doesn’t mean that you are 100% dependent on exogenous insulin. Anyone who has looked at LADA and extended honeymoon periods can confirm D doesn’t always fit such neat categories.
I’m a T1 IDDM, diagnosed at age 10 with very acute onset, so about as classic T1 as it gets. As an adult, I added metformin on advice of my endo, in addition to insulin, and it helped increase my insulin sensitivity (so my TDD went down) and decreased my dawn phenomenon, as well as helped me lose some weight I’d gained. So there is no hard and fast rule about that, and more and more T1 are using oral meds (esp metformin) as supplements to insulin.
Also, Afrezza is just inhaled insulin, so why would that make a difference whether someone is T1 or LADA or insulin-dependent T2? Would be potentially useful for any.