Using Afrezza for a Teen

I hope by describing our family’s experience with Afrezza, that other diabetics will be able to anticipate the challenges we faced in acquiring and using it. But first I want to thank all the users and advocates that enabled us to get an Afrezza prescription for our 17 year old type 1 diabetic son. I won’t take the space to thank you all by name. I am referring to the online twitter community that tweets using the #Afrezza hashtag. I know these pioneers and patient advocates also post on other social media and advise anyone interested to seek them out.

First I point out that twitter accounts intended to slam Afrezza and its stock do far more damage than should be permitted. These people both directly and indirectly harm type 1 diabetics and their accounts should be blocked as soon as their comments cross the line into harassment. Those using social media to learn more about Afrezza and prescribers beware these “trolls”. Do not feed them but keep a close eye on their antics and transgressions. The SEC will hopefully do its part at some point as much of this harassment seems intended to abet short selling of MNKD on the stock market.

Second essential point: Don’t take no for an answer if your endocrinologist or GP denies you Afrezza. This is not the middle ages. A blood glucose tool for the third millennium exists but is being kept from pastients by a medical and business establishment that has no clue of the psychological and physical harm that is done to diabetics by preventing them from learning about and relying on Afrezza to treat their diabetes. It is a game changer.

Granted there are problems and idiosyncrasies that also limit adoption of this new treatment paradigm. But lets be realistic: the standard of care and treatment of diabetes will not improve if diabetics accept as given the psychological and physical toll this disease exacts as they must strike a bargain between glucose control and a tolerable quality of life. I have already seen the trend to favor a less stressful life of lowered blood glucose control expectations developing in my son despite our best efforts to how him how optimum control is possible.

All diabetics using the current injectable therapy, that remains the standard of care, must strike this very personal balance; and, the individual choices, some tragic, point out the true dimensions of this disease and its treatment. Access to Afrezza or any other therapies for diabetes must be personalized to match the psychological as well as physiological dimensions of this ravaging condition. It is not and should not and shall not be left to the comfort zone of physicians, HMOs, Insurance companies or investors in pharmaceutical companies. Why should we expect all diabetics to live the same lifestyle, eat the same diet and tolerate the same risks? New tools have been created which allow them to manage their own risks and choose how they will live with the limitations enforced upon them by diabetes. Why should they also have to live with the limitations impose upon them by physicians, HMOs, Insurance companies or investors in pharmaceutical companies?

My son has barely used Afrezza for 1 month. It has already immeasurably changed his and our family’s life with diabetes- though it is too soon to report an A1C change. Concurrent with his switch to Afrezza we have been dealing the end of a long (he was fortunate) “diabetes honeymoon” which we were somewhat unprepared for. As we were adjusting to Afrezza we were also adjusting his Lantus (basal insulin) from once up to twice daily injections a day and from 17 units/day to 21/day. In many ways Afrezza helped us understand how his humaog bolus at meals was masking the increasingly insufficient basal coverage. With Afrezza, as the basal dosing increased he has been able to flat line in the night like he did during his long honeymoon (he was fortunate).

As his prandial insulin, we immediately noticed that Afrezza is very fast. He never spikes at the beginning of a meal when using Afrezza. His time in range is markedly improved. And meals out and snacks are no longer full of anxiety over how to cover and measure carbs for his insulin shot. Taking the shot in a crowded restaurant was itself a huge buzzkill.

He has gone low on Afrezza but rarely. He reports the low feels nothing like the desperate and long drawn out episodes he feels on Humalog. And this is confirmed by CGM traces that show lows are shallow and brief. As we better understand how to use Afrezza (don’t take a dose if you are at 69-wait till you are over 100) we know lows will be even less common. Generally he has no problems exercising with Afrezza, even right after a meal. We notice that Afrezza seems to lower blood sugar with exercise much more reliably, effectively and safely than Humalog.

I have posted some CGM traces on Twitter but confess my son is not a consistent user of his CGM. I wish I could get more data public but I cannot force him to do this. We have found however that one can use a clock almost as well as a CGM or fingerstick in timing Afrezza doses. The trick is in understanding how a pancreas would handle a meal. I am not advising this approach but being pragmatic for our situation.

My son is alas a teenager. Since getting Afrezza we have allowed him to eat and manage his own care like never before. This means he eats a lot of carbs at all different times of the day. This is not an ideal situation, even with Afrezza, since he often forgets to check on whether he needs follow up doses. Effectively, our family has lowered our expectations of better blood sugar control and time on CGM in order to allow my son to be free to eat and behave as teenagers will. We rely on Afrezza’s superior PK/PD to make the trade off of control for freedom a net neutral for his blood sugar control, which, was already pretty good (A1C in low to mid 6s). We note that in the month since starting Afrezza our son has grown almost an inch- the most he has ever grown in such a short time AND WE THOUGHT HE WAS DONE GROWING.

But it hasn’t all been footloose and fancy free. It has taken a while to get the prescription right. Whether the FDA label or newness of the product, standard packaging of dose counts has been hard to figure out. And we have already changed the rx form its original package. If Afrezza were an off shelf medicine it would be so much easier to tailor dosing and amounts for individual and family diet. Why the heck can’t insulin be sold from the aisles? Its not like we ever check with the clinic when dosing for a meal. Is this about insurance and the HMO practicing medicine?

Because of the “titration” and Rx package changes we have had two gaps of over three days without Afrezza. My son had to fill in with Humalog - which made us appreciate Afrezza all the more. It took us a while to understand that our son needs more Afrezza because he wants to eat like a teenager. A “standard” Afrezza pack would be enough for the diet appropriate to my condition and age. My son needs more – which is also more expensive. That is the other problem we have. My son’s Rx is off-label since he is a year shy of 18. We have to pay cash since our insurance won’t RX, won’t cover and the company coupons are not valid for minors. I don’t want to bash the company, it is struggling enough just to make Afrezza available to diabetics. HMO price and insurance coverage are outside the companies hands. But if there is one reason Afrezza use is not more widespread, price may be a bigger factor than may be appreciated.

It also took us a while to realize how much more Afrezza is needed to bring down a high than using Humalog for corrections. It’s a little intimidating to take 8units to bring him down from a high of 200. It is also more important, therefore, to stay on top of glucose rises after the many high carb meals he eats since going out of range requires so much more Afrezza to correct. He is slowly adjusting to the fact that he cannot just forget about his blood sugar just because he does not see a spike immediately after eating with Afrezza. Big carb meals will need follow up doses.

I sometimes wonder whether an alternative formulation of Afrezza that mixes in a little of the longer lasting analogue hexameric insulin (like Exubera?), along with the majority portion of first phase human insulin currently used, might make titration a little easier. Lengthening the second phase activity might decrease the need for more follow ups and corrections. It might also increase hypos, but perhaps a happy medium could be found? I realize this would require more FDA trials and more $ but, come on, shouldn’y we try to perfect this to give diabetics the best quality of life and lenght of life they can have? Isn’t that what the new 21st century cures act is supposed to expedite? Why shouldn’t Afrezza be the first test of this initiative?

We have managed to get past the learning curve and I know my son will never willingly go back to injected prandial insulin as long as Afrezza is available. However, I wonder if more should be done for less activist diabetics and their parents. I suspect the barrier for some patients is identical to the barrier encountered in the endocrinologist’s office. Afrezza works like pancreatic insulin, but how many pateints and endocrinoligists really understand how an individual’s pancreas would act (WWMPD?) with a given meal, how many times would it fire? Does the body’s insulin degrading enzyme act more readily on monomeric human insulin than hexameric analogues? Is there an efficiency threshold for Afrezza dosing beyond which degradation mimics insulin resistance? Is that why corrections are more demanding on Afrezza and hypos less frequent? It would be nice to have answers to these and other questions for prospective Afrezza users and prescribers.

In spite of his difficulties with transitioning to Afrezza and this new version of “compliance” we have noticed our son is much more involved in titrating and planning for his meals. This is no doubt due to the fact that meals with Afrezza can be spontaneous (you can inhale right as or a little after you eat) and that you don’t so much titrate aliquots of medicine as fire up the inhaler as if it was an external pancreas. In short, his experience with Afrezza has also made him more responsible with the old injectable regimen - when we have had to revert to it (and should he ever need to go back to liquid insulin). Somewhat unexpectedly, Afrezza is definitely helping with the independence project. And as the experts know, the transition to adulthood is one of the hardest and most dangerous times for type 1 diabetics diagnosed as juveniles to navigate.

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What an outstanding post. I am thrilled to read about your experience. My son is only 12, so he is not qute ready for it - but I am cheering for this insulin - and for you and your son!

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I’m happy to read about your teenage son’s successful use of Afrezza. It’s nice that it can help with the tension often created between good diabetes care and quality of life issues. Good luck with your son’s continued success with Afrezza and the “independence project”!

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This is really fascinating information, and makes me so wish that Sanofi hadn’t cut the cord on MannKind, as they were in process of doing trials in children which are now on hold indefinitely. There’s no way anyone will approve this drug for a three-year-old, but it does seem so much more suitable for the toddler lifestyle.

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Hi Steve_R1,
I appreciate your post and sharing of this information. It sounds like you have had great success with Afrezza so far.

Two things I wanted to mention!

  1. The first is something I have never seen in the context of Afrezza, and I think it is an important idea to bring up. Most every diabetic who takes insulin probably has a glucagon kit for emergency. This has been fairly standard issue for quite some time. But I have never heard anyone offer the idea of having Afrezza as an emergency kit for high blood sugar. Even if someone is using a pump, and wants that granularity of dosing and adjustment of basal that a pump offers, why not have a few capsules of Afrezza on hand for treatment of high blood sugar?!

It seems like the perfect companion to the emergency glucagon kit is the emergency Afrezza kit. There is no need to have high BG that takes hours to bring down with Humalog or NovoLog.

Hopefully people will consider this. Even if someone likes their pump, having a quick fix for high BG would be a good idea.

  1. The second thing:

I know that sometimes the food can outrun the Afrezza. Which is the opposite problem you get with subcu injections. I’ve had great success combining “faster” insulin delivery with subcutaneous injections. Together they work great. No spike early or late. Consider trying a small amount of Humalog or NovoLog along with Afrezza and see how that works for you. I do something “kinda” like that and it’s great.

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Don’t want to presume too much about how Afrezza can be used and which age groups can use it. Relearning how to treat diabetes is a formidable obstacle as well.

But from our experience it seems a certain amount of independence and “maturity?” is required to really use Afrezza to maximum advantage in glucose control. Some kids may be able to do it from a young age, I suppose. To do so requires appreciation of the fact that Afrezza, as currently formulated, does not last much longer than about an hour and a half (the “tail” seems somewhat dose dependent). However our son’s gastric and absorption process seems to take about 2 and a half hours. So he almost always needs that follow up.puff. However we note that for very low carb meals one puff is often enough.

There is also a little catch of a cough in this throat after frequent dosing. This can be disturbing. We are waiting to see if this passes as has been suggested is common. Does not help that he is relishing frequent snacks and high carb meals which means more puffs.

Yeah, I think he’s too young still… if only because teaching him how to use an inhaler would be challenging. he is not “in charge” of any aspect of his care at this point, so not too worried about his maturity level. But every time we do a site change it just makes me remember how much stuff he’s carting around attached to his body, which makes me feel bad for the little guy and wish there was something slightly less invasive for him.

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We have thought about the combination trick but are taking it slow for now. great idea though! do you just use a 4u for the first phase? does that work for even bigger carb meals? I am assuming you can get a humalog peak in about an hour, just when the Afrezza starts to lag. so you would inject the RAA at the same time you puffed on the Afrezza?

And yes Afrezza has the opposite concern of the food outrunning the insulin.

Yesterday when he came home from school he was at 245 (forgot his lunch follow up of Afrezza!). He took 12u (an 8 and a 4) and in 20 minutes was diving below 100, So he ate a chocalate truffle (9g carbs) and flat lined around 100 until dinner at 7:15. Pretty remarkable!

I’ve been using Afrezza for almost two years now. I only use for corrections and unplanned treats at this time. I’ve found for BGs north of 200 that one 4-unit cartridge of Afrezza combined with a 2-unit dose of Apridra will nicely bring my BG to heel. (Your diabetes may vary.) I’ve also combined an Afrezza correction with an intramuscular (IM) dose of rapid-acting insulin.

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We are also using Afrezza to minimize lows. His endo was concerned because she knew the only way we could feed a teenager and keep his A1C below 7(which we have done for 2 and hafl years since diagnosis) was to endure frequent hypos. Thus, taking an indefinite subcu hiatus sort of overides other considerations at the moment. When he decides to eat more sensibly, he may adopt regimine you adhere too. Musc easier to manage hypos on injectables with lower calorie/ lower carb diets

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Congratulations to you and your son. Becoming a young adult is a tough enough time in ones life without type 1 diabetes. There is zero doubt in my mind this tool can make that easier and healthier both physically and psychologically

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Excellent points, I completely agree. IMO, Afrezza should be routinely prescribed and available to everyone to treat dangerous highs, just as glucagon is available to treat dangerous lows.

Exactly. IMO, there are no contradictions at all in using a pump and Afrezza together. For example, @Terry4 has done that with great success. In fact, Afrezza should also be a fantastic add-on to hybrid closed-loop systems: take a puff to blunt the initial spike, and let the closed-loop system take care of the rest automatically. This could give us near-perfect control with minimum effort, almost hands-off. I hope I’ll be able to give this a try some time this year.

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@Steve_R1

Excellent post. I was the first to use and post my experiences with Afrezza here on tudiabetes and it warms my heart to read a post like yours. I still use Afrezza and haven’t had too much trouble getting it. It is an amazing step forward for diabetics and hopefully it continues to gain momentum.

Best of luck to you and your son.

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@Dragan1 Hits nail on head

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Mike,
I pored over every one of your posts for months as I was discovering Afrezza on line. Probably responsible for half of you “view” hits, lol. You and Sam Finta were my go tos for my early education!!! Thank you so much for all you have done for the diabetic community. I really appreciated all the effort!

I know you have posted on Twitter but do not frequent it so much (it is frustrating trying to explain complex subjects like diabtes in under 140 characters, isn’t it). Thanks, in case I forgot to express it to you on twitter!

Steve

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That’s awesome, glad sharing my experiences helped.

I don’t post as much Afrezza stuff on Twitter anymore because of the crazy trolls on there. Every once in awhile I’ll put up a CGM shot and mention Afrezza because I’m still amazed by it.

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Well it is an absolute game-changer and a lot of people respond suspiciously to it, even here on this forum some people who aren’t deliberate trolls have responded with disbelief. It seems too good to be true. That’s a different thing than trolling to discredit it as a stock shorter. But like Steve says there is an army of trolls out there and they are disgusting terrible people who are willing to harm other human beings and prolong human suffering in order to potentially make a few bucks. Disgraceful. I’d like to get my hands on one…

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Hello again Steve. I’m glad you were finally able to obtain Afrezza and that your son is having a great experience. I will update you on my son’s experience, and will look forward to hearing your’s in a few months.

My son started on Afrezza/Tresiba around age 16. He had gone through puberty about a year before that. Our first few months on Afrezza were fabulous (after the 2-3 week learning phase). Then, almost suddenly, we could not keep his blood sugar levels down (no change to diet or exercise). Despite more basal (Tresiba) and more bolus (Afrezza), he still ran high. I would estimate that he was using at least double the amount of Afrezza to control BS than during the first few months, and still would run high. To get his health back on track, we abandoned Afrezza/Tresiba, and went back on his pump and Humalog. At this time, he has been using about 100 units of Humalog per day (eats lots of carbs) compared to 70 units per day before starting Afrezza. His endo and I believe that he entered into a “hormonal time” which made him somewhat resistant to all insulins, and that he will return to more normal levels eventually. I DO NOT believe that Afrezza “quit working effectively”. (Though I have heard some adult users say that they need increasing amounts of Afrezza to keep BS down after using for many months.)

We loved the freedom given to our son during his time on Afrezza … it was great to be pump free for that time. We hope to return to Afrezza/Tresiba when teenage hormones stop raging, which I believe is starting to occur, as my son has been running very low the past couple of weeks.

I will be very curious to hear of your son’s experience in the months ahead. Please repost later this year, if possible. Good luck!

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Please keep us posted, i am very intrigued by this idea!