Some of you may have heard that I’ve been having issues with Afrezza, the new inhalable insulin from MannKind/Sanofi that’s such a hot commodity among investors.
I’m disappointed that it doesn’t seem to be working as well for me now as it did at the outset (I’ve been using it since mid-March), but I am in direct contact with the product team to troubleshoot, in the hopes that I can return to the amazing results I saw back in Spring.
Meanwhile, purely in the interest of helping fellow patients who may wish to try Afrezza, here are six things you may want to know before you get started:
1) Adjusting Quantity – Be aware that you will need MORE Afrezza than any other short-acting insulin. The “units” of Afrezza are by no means a one-to-one relationship to the unit measures we PWDs (people with diabetes) are used to. You may also find, like I have, that while a 4-unit dose of Afrezza packs a punch in the early days of use, as time goes on you need to increase your dosage. So think about ordering the mixed pack of Afrezza, that includes 4 and 8-unit cartridges. Otherwise, if you need higher doses, you may end up having to inhale 3 or 4 times or more per meal, which is highly inconvenient. Sanofi’s Senior Medical Director Diabetes and U.S. Medical Lead for Afrezza Anders Boss tells me the 12-unit option that’s now FDA approved may be available as early as September.
2) Inhalation Technique – Boss also reminds us that it’s important to hold the device level before inhaling, and then tilt it just a little bit down towards your chin while dosing. Do not point it upwards at all. Also be sure to take a long, deep inhalation, rather than sucking it into your mouth like you might when smoking a pipe. (And by all means don’t hold the inhaler upside-down, like I did in my initial photo mishap; although NOTE that was simply a photo opp gone bad. I NEVER used the inhaler that way, and am pretty sure it’s actually impossible to do so. Correct inhaler positioning shown below.) See also this Afrezza training video for best practices on inhalation technique.
Also: Boss says refrigerated Afrezza should be allowed to rest at room temperature for about 10 minutes before you use it, because a too-cold cartridge can create condensation, causing the powder to clump and get stuck in the top of your mouth. (There’s one problem you never imagined having with insulin, ay?!)
3) Colds and Cough – When I caught a cold and got very phlegmy earlier this summer, I found it very difficult to dose Afrezza without coughing it out mid-inhalation. The effects of this actually lasted for several weeks after the rest of my cold symptoms were gone. I could actually see the white powder coming out my mouth or nose as I struggled to keep my cough in check while dosing.
Interestingly, Boss says that having a common cold should not interfere with Afrezza’s effectiveness. He says in studies, they’ve started patients who had a cold and compared the results to those of healthy patients, without incident. All I can tell you from personal experience as a type 1 pumper is that if you do have a cold, a little bolus boosting from your pump may be in order – especially since being sick increases your overall insulin needs. And to reduce the “cough effect,” be sure to exhale hard each time before attempting to inhale Afrezza.
4) Leftover Powder – I was also very worried about seeing some residual white powder left in the cartridge after most doses: was all the insulin really getting into me?
But Boss reassures us that a little leftover powder in a used cartridge should not cause concern. The manufacturers don’t expect 100% absorption, which is also the case with injected insulin, he says. “It’s OK if about 8% still seems to be in the cartridge afterwards. That’s calculated in. You lose some in the mouth, some in the cartridge. It’s such a fine powder that most of it absorbs in the lungs.” OK. Wow.
5) Two-Unit Option & Kids – Those who do continue to need small amounts of Afrezza will be happy to hear that Sanofi is actively “looking at a 2-unit option, with correction doses in mind and for kids.”
In fact, they are in the process of setting up pediatric trials now, Boss says. The first study will focus on pharmacogenetics (genetic drug response) to be sure that children will absorb inhaled insulin the same way, and whether they can handle 4-unit doses.
6) ePatients Beware – If you plan to blog, or in particular, Tweet about your experiences with Afrezza, beware investor trolls! They are mostly obvious with brand new Twitter accounts showing only an “egghead” profile pic, and a timeline that talks nothing but #Afrezza. Some are more subtle. But all are pretty ruthless in their attempts to control the message in the interest of influencing MannKind stock prices to their own advantage. I guarantee that unless you are saying 100% glowingly positive things about Afrezza all the time, you will be hounded and patronized. I encourage you to BLOCK anyone who is obviously in that camp, possibly using a new tool called Blocktogether (thx @ScottLeibrand for that tip!)
We’d love to hear from any PWDs out there using Afrezza in the trenches of day-to-day diabetes. What have you learned that might be share-worthy? Please don’t be afraid to speak up.