Week 19 and a (crazy) question above to answer once and for all. First, my favorite photo of the week!
Spiro has been a strong voice for Afrezza support because he’s seen firsthand how unbelievably fantastic it works. And it’s still working better than ever. Spiro will tell you that Afrezza has made his life easier, and he really enjoys being in total control of his diabetes–without any needles. One of my best memories is hanging out with Spiro in Miami. Jay Stokcton has done such a great job of elevating Spiro to a well-deserved “celebrity status” amongst all of the “Afrezza Users” with his artistic ability. Thanks Jay for showing how much you care about what you do and making a difference for all diabetics. I thank you and I love what you did to one of the “coolest” guys I know! Now it’s time to answer the question.
Is Afrezza still Working for everyone?
What do you think the answer will be? Seriously, over the last 19 weeks we’ve transparently answered all sorts of questions and comments that happen to all of us. In addition, each of us post online our experience and opinion as well as proof of our ongoing progress (lab reports, CGM data), and more importantly there is no conflict of interest in our data. We all have jobs and none of our descriptions are “compensated big pharma blogger”so you’re getting horse’s mouth truth and no tainting. We’re ordinary folks with families and pressures and we simply report it like we see it. We also help each other tackle the daily challenges of diabetes as you have seen through our twitter accounts (all public addresses located underneath our names) and articles.
As a reminder, our CGMS’s (primarily Dexcom) take measurements every 5 minutes of every hour of every day of every week OR 2,016 calculations per week or 8,048 per month (that would be heck of a lot of fingersticks to obtain that accuracy). Over 19 weeks, that comes out to approximately 38,000 “verifications” per person so far of where our Sugar levels are for the longest participants. I started this “Real Life” Results group with the goal of being “guinea pigs” aka “pseudo trial patients” to see how everything would turn out for people out there considering Afrezza in the real world, and proving to the naysayers that it could work for others as well as it did for me. I was wrong because as it turned out, it worked even better for some others than it ever did for me! Does this mean that Afrezza will be really successful–a “blockbuster” billion dollar drug? Did it meet all of our expectations? Did we have any stumbles or setbacks? Next week for Week 20 I will summarize our group progress, individual summary numbers, and ongoing results that should answer all those questions. Moreover I will still continue to monitor everyone in our groups (ie. including our A1C’s which I believe we have a few appointments coming up in August), but it’s time we show all the numbers and then broadcast that to the world!
In the meantime, may I offer some personal thoughts if anyone out there suspects that Afrezza is not working:
First, a disclaimer I am not a doctor and don’t give medical advice nor should you ever take any advice without talking to your physician. I can only provide the feedback I’ve heard from hundreds of people who I speak or communicate by email with and how Afrezza has worked for them. A few times when I spoke to someone that was experiencing a problem it ended up being a user error from holding the inhaler like a straw looking straight down to trying to inhale upside down. (By the way, if I would see any powder left in a cartridge I would just pop the cartridge back in and inhale again). I have never run into this issue. Some of this is just some common sense. Please understand this is diabetes, and it’s a messy, terrible, no good, very bad disease. What is truly unique to Afrezza is that you are able to find out right away how your insulin is working in “real time”. For me, when I was on injectables, I was taught you give yourself the 3 shots (minimum) a day and after each shot about 3-4 hours after a meal, you will then see where your blood sugar “lands” (i.e. if you gave yourself too much or too little or just the right amount). Sounds easy, but the meals (and if you snack) tend to overlap, and usually you find yourself constantly chasing highs and lows all day (ie. VERY HIGHS and VERY LOWS–at least for me) since it takes so long to work. Whenever it seemed like my injectables weren’t working, I would blame myself (I must not have carb counted or matched correctly and did the math wrong, or I didn’t “time it” just right and I took it too soon or too late–there are many, many possibilities…) and that is where the problem begins. Because with Afrezza, most if not all of us never carb count (only quick estimation), and we don’t have to anticipate an hour beforehand what and when we’re going to eat, we just take it with our meal, and then do a quick “follow up” dose about an hour later or so (ie. for phase 2 insulin response) if we need it.
Thus, we are treating our disease in “real time” and so we always expect to see “real-time” results! Well, this is where other factors can tell you something else might be wrong. For most of us in this group, we find that if we’re sick (or just beginning), or feeling ill, or stressed, or didn’t sleep or dealing with too many things at once, our bodies because of diabetes tend to behave differently. For instance, this week Ann had a medical issue going on and if you look at her numbers they are the worst she’s ever reported (sorry Ann)–was it Afrezza’s fault? Absolutely not, and she didn’t panic because she knew what was going on. Sometimes in life, we’re just not able to know everything happening within our bodies all the time. However, one thing is constant–we can generally rule out that it’s Afrezza’s fault and adjust accordingly–yup, that simple. If we need more insulin we take it. If we need less, we take less. You see, all the things we learned on injectables just don’t apply to Afrezza–it is a NEW drug with different properties and we understand after using it for 3-4 months (for me a year) how it works with our body. And you will too!
Side note: Every day I see diabetics posting charts of 200 and 300 blood sugars (or higher). They usually cry out “Oh well, I guess it is just one of those days”! Is it fair or even interesting that I never see the same naysayers saying Novolog or Humalog is not working for them? (or many of you might say–wait a minute, I never see graphs or charts that high with the Afrezza Users?). How about the million of diabetics with their A1Cs of 8s, 9s or 10+. Is their insulin working– or should their question be– is their injectable insulin just not able to do the job? If someone claims afrezza is not working (and they wish to post that publicly online) please also post your Dexcom/CGM readings before Afrezza, on Afrezza and then post Afrezza and not a picture of just one spike. That helps no one, and as a diabetic we all have spikes. In our group we always post an entire weeks of results (and have been doing it for 19 weeks) and also our A1c blood results from the doctor when we take a test. Lastly, this blog article is not intended to be negative towards Injectable insulin. Over the years, it has saved millions of lives, and as a diabetic I am extremely grateful it was available, but now, there is a better, faster solution that mimics the bodies natural process, and I feel it’s important to at least have that option open for all diabetics. Yes, doctors have gone to learn how to correctly titrate and it’s a very big skill for an endocrinologist, but with Afrezza, it’s simply not necessary any longer. Call it obsolescence or “changing with the times”, but I hope the reason Afrezza is not making more in-roads is not because doctors still want to titrate down to the ½ a milligram which is completely unnecessary on Afrezza in my opinion.
On a similar subject, another person asked me recently, what’s the difference in time between dosing on injectables and how you dose with Afrezza, or does it take the same amount of time?
In general…NO! Of course there is a lot more prep with injectables (and you can watch the video online of how long it takes to use Afrezza vs. time with Injectables), but the biggest difference in time, is the hours and hours of time you spend on injectables constantly and obsessively thinking about diabetes and planning your entire life around it. With Afrezza, that time is now mine. And I will certainly not waste it doing math, planning menus in advance, or waiting for my insulin to work during the day or late at night! The biggest difference isn’t the ultra-fast acting nature of Afrezza–(although that is pretty big)–it’s actually the feeling you discover that you have your life back! This will be hard for a non-diabetic to understand, and I’ll do my best to explain– diabetes is like living with “post-traumatic-stress-syndrome” all the time, and most likely a major factor in my why so many diabetics are non-compliant or have “given up” on being rigorously “on it” to treat their disease. You see, the options we had to treat diabetes didn’t give us the tools we needed to truly improve our condition (ie. A1C levels) and quality of life… until Afrezza came along! Afrezza will definitely be a “go to” treatment when people find out about it—9.5 out of 10 diabetics or more still don’t know it even exists. I think this will change very quickly after the doctors see the A1c’s and the results their patients are getting (and more importantly, how their patients are feeling). Once a doctor has success with one patient, that doctor will prescribe to a few others, and then it slowly spreads. So you won’t see this “mindset change” for probably 3-9 months or more because it takes that long for scheduling the appointment, lung test, and learning to use it over a few months time, and then getting that new A1C result. Speaking of A1C’s….check out these improvements so far…
Here is the Type 1 Week 19 Chart:
Notice that as a group we are running an average correlation of 5.73 vs. our latest A1C’s of 6.22. We are at the point of starting to get more A1C updates and it will be interesting if we go even lower as a group! Notice that we are all different sizes, shapes, ages (and we’re from all over the USA), yet we all still get a similar result!
And here is the Type 2 Chart for week 19:
Congratulations in order to Brian who just officially posted a 6.5 A1C from his doctor–we’ll catch up with him in next week’s blog article. Look at the results of the Type 1 and Type 2 groups and you begin to see some startling coincidences—A1C’s in the low 6’s (guessing we’ll see high fives before too long) and complete control and early intervention before complications of diabetes take hold.
The Type 2 Group is doing well. Spiro has been on Afrezza the longest, and inspires us all. Thanks for all you contribute online Spiro (and Hillard and Brian, too)!
What is the Afrezza Users “Real Life” Results Group?
It is a group of Afrezza Users who use a Continuous Glucose Monitors (most of the Type 1’s) seeking tighter diabetes control and measuring the time spent in each blood sugar range. Laureen and Julie are also Type 1 but they use “finger prick” measurements throughout their day to measure their blood glucose levels while the rest of us are using CGM’s (continuous glucose monitors). For Type 2 diabetics, nearly all use finger prick measurements, and this is the the case for Brian, Hillard and Spiro. It is NOT a competition between T1’s and T2’s nor among any of us and was only started so people could understand and see the inherent benefit of why Afrezza provides better control and higher patient satisfaction for Type 1 and Type 2 diabetics over any our previous regimens. In essence, this is a “real-world” trial of “do your best”, and have good and bad days, but keep track of it all, and let everyone know the results. Well, the results thus far are clearly and unbelievably positive for Afrezza.
Why are you doing this?
There has been so much discussion about the FDA Afrezza Drug trials and why I feel as a participant in the Affinity 1 trial, there were significant “hold backs” as to why we were not able to materially outperform Injectable Insulin because of the protocols on the trials. This is no longer the case!
To Summarize here are just a few of the hold backs why Afrezza didn’t get to show how great it works:
- Afrezza Dosing was only changed approx. every 6 weeks, and not flexible dosing depending on meal
- No CGM’s allowed
- Time in Zone not measured
- Patient Quality of Life not measured
- Brand new Afrezza users vs. Very experienced Injectable users (what if it was brand new injectable users vs. experienced Afrezza users—would that be fair? No-they would stop the trial right away because it would be a TKO/referee stops contest victory for Afrezza which we are already proving by “real-world” experience.)
What would you like to express to everyone out there considering Afrezza or to any doctors considering prescribing Afrezza for their patients?
My opinion is that Afrezza is a “life-changing” drug. It improved my life and every single person in our “real life” group which gives me hope that diabetics everywhere can be helped by this insulin therapy. I wish the same for you or any other diabetic you know—to enjoy a better, longer and higher quality of life! Please demand to try Afrezza from your doctor, and see for yourself!