Been to the endo today and asked for an Afrezza sample (which is not pronounced uh-freeze-uh, by the way. ) Anyway, I asked for a sample and had to laugh at her response… She told me she no longer had any because she had dropped the rest in the trash. It was a long appointment, and by the time we got to that, I was fine with just an “okay, thanks”, but I’m thinking about a follow up email to hear a more detailed explanation. In a rush, she said that she and “many others” really didn’t like the doses and that there were just too many concerns. I know there are lots of people who seem to love it, and I absolutely get the appeal, but I’m curious what the endos are saying… So if anyone has asked before or is heading to their endo any time soon, I’d love to hear what they think about it…
I can see already see the problem with this post and have lowered my expectations accordingly.
I have not tried Aff but have discussed it with my endo a few times. She advised to carefully consider the unknown long term risk to lung function but “give it a try if you feel the need for its rapid response”. She has patients using it but is not a booster…did not have any samples. I got the feeling that she would not support the medical necessity letter I would need to try for insurance coverage.
So far I have been bolussing and correcting BG with Fiasp with good (for me) results.
I think a lot of doctors who were too intellectually lazy or not curious enough to actually pursue an understanding of how the doses work completely differently than liquid insulin just don’t and never will understand the appeal. If you are stuck in a 1990 way of thinking about insulin dosing, it is not appealing.
There are no legitimate safety concerns. Those are a farce perpetrated by its competitors… big pharma at work.
My doctor was skeptical at first, but agreed to prescribe it if id give him feedback on how i liked it and gave me his personal email… I did so…
He still prescribes it but I think takes the intellectually lazy “insurance doesn’t cover it” route… which is also false… actually just means it requires a modicum more effort for him to prescribe.
Seeing the extremely tepid response in the medical community of such a revolutionary, life changing, breakthrough of a treatment has really caused me concern for the future of diabetes treatments… I think truly smart insulin could come along and if it wasn’t one of the big three who brought it they’d have the ability to stack the deck against it to the point that we’d be having these same discussions about it… it’s a damn shame really… patients who’ve received tremendous benefit from breakthrough treatments shouldn’t have to feel obligated to get on the internet and go to bat to defend them… it’s results and safety record absolutely speak for itself. How many people have been taken off this med due to problems it’s caused them? Approximately none.
My endo “tolerated” my request and use of afrezza. Gave me all the samples he had. I asked if any other patients were using, and he mentioned he knew of only one patient with another endo in the group.
My insurance does not cover, so used sparingly, until price went up too much (at Costco with coupon). But now using again with new discount program that lasts through year end. It took several emails and phone calls to get RX correct. It is also more cost effective since I learned about splitting.
Definitely think that the “fuzzy” dosing is a big deterrent, and one of the reasons endos aren’t excited about it.
My doctor was willing to prescribe it, but advised me that the long term effects are unknown. He had prescribed it to one other patient before I started, a lady with Type 2 who was afraid of needles. He does not advocate for Afrezza and had no samples to hand out in my first appointment. He is listed on Mannkinds website as a provider, likely because he has patients using the drug.
He was very clear that he had no problem prescribing it, but he does still feel like I’m taking a risk being the guinea pig.
Since his first patient was using it due to a fear of needles, I don’t think he realized that timing is Afrezza biggest asset. He’s been able to see my success since I started using it, and he seems more comfortable with prescribing it now.
I’ve noticed no difference in my lung function while swimming or doing anything else. My spirometry test came back normal. I wish everyone could easily use Afrezza. I think it’s amazing stuff, and it’s made my life so much easier.
Imo opinion it’s not “fuzzy dosing” it’s light years ahead of previous century insulins that require precise dosing. That’s an advance!
Do you have to take exactly the precisely correct number of milligrams of ibuprofen if you have a headache? No, you just take 1, 2, or maybe 3 and it’s that simple. That’s pretty much how afrezza works. I think the world might not have been ready for such an advance. It’s like someone showed up with an electron microscope in the Paleolithic era
My lung function has actually increased since I started it, which doesn’t mean anything because it’s a totally sloppy meadure… but I’ve also went from being a couch potato to a semi avid runner. I have exactly zero concerns regarding that. The requirement for testing was a back alley dealing from big pharma. It was not recommended by the fda expert committee… nor were the contraindications or warnings… that’s big business industrial sabotage at work…
It’s not approved in Canada yet. I don’t even know if Mannkind has applied. In the meantime, healthcare people just won’t talk about it. I mention this amazing new inhaled insulin that sounds great for dealing with stubborn highs and users say it miraculously levels out in target range … and I get blank looks and tightly sealed lips. Funny thing is, as soon as it’s approved, I bet my endo will be all over it. “Beacher, here’s a script for this amazing new inhaled insulin that’s great for dealing with stubborn highs and miraculously levels out in target range! You’ll love it!” I hope.
To put it mildly, I see an endo “infrequently”. In fact it took seven or eight years from the time my last one retired until I finally made an appointment with a new one at Joslin who I saw in December. I probably wouldn’t have bothered even then, but my PCP didn’t want to write prescriptions for anything new, just keep renew-ing my old prescriptions.
So I googled for an endo and got an appointment at Joslin with a list of things I wanted to try for the first time: G6 CGM, Tresiba, Fiasp, new BG Meter, and Afrezza. He gave me prescriptions or samples of all except the Afrezza; he was simply not enthusiastic about it and wanted me to wait. I was happy with the number of things he did supply, so I didn’t press him on the Afrezza. He didn’t say he would not prescribe it, just seemed reluctant unlike all the other things I requested. I’ve been happy with everything I tried except the Fiasp which I didn’t see any advantage to (I inject, not pump).
I haven’t gone back to see him; I’m trying to decide whether I should go every year or not. If I do I’ll bring up Afrezza again; I want to at least try some samples to see if I like it. Of course they may not have samples available at Joslin - if they did it seems more likely that he would have just thrown one in my take home bag. I don’t know if his reluctance is widespread at Joslin, or whether it was just him. But based on that very limited data set, it does seem that Afrezza hasn’t been warmly embraced by the endo community at large.
A little late on the response in this thread, but my current and soon to be (sadly) Endo isn’t prescribing Afrezza due to potential side effects like COPD. She does acknowledge the efficacy of the product and is open to prescribing in the future once the Initial user group ages to see if there are any lasting side effects.
Could you explain what you mean by this? I don’t believe this is listed as a side effect of Afrezza. I think there are contraindications for people with lung disease or asthma, but AFAIK there’s no evidence that COPD is a side effect for healthy people.
Has she given a time frame for when she feels like a lack of side effects by that time shows that there’s no reason to expect side effects in the future?
I was puzzled by her attitude too @Katers87. She wants to wait ~5 years to be cautious? Usually I get this type of a reaction from Kaiser Permanente Drs. Makes me wonder what is out there on the Endocrinologist grapevine…
Seems to me like they just don’t want to be the first ones prescribing it. My guess is that more endos prescribing it will lead to more endos prescribing it. I assume there are hardly any endos at this point who get a new patient who’s already using Afrezza and has been doing so successfully for multiple years.
I’ve checked repeatedly over the past 12-18 months and it’s status-quo here in Canada: "regulatory filings are in progress for Mexico and Canada.”
In this case it seems we Canadians are living in a black hole as our government agencies always are amongst the last globally to approve drugs & medical equipment.
This seems entirely plausible. [quote=“Katers87, post:16, topic:7592”]
guess is that more endos prescribing it will lead to more endos prescribing it.
[/quote]
Most likely. Maybe the Mann reps need to give more trips to the Caribbean like Lilly used to.
So does anyone know the mechanism behind this? I mean, it’s not perfect of course, you can drop low while using Afrezza. I just want to make that clear to people reading this. Lows happen. They’re just less likely to occur and when they do, they still seem to level off around 60-65 and then meander their way lower until you nudge them in the right direction. It’s a very different experience from the lows I’ve experienced on the tail-end of a Humalog dose.
I don’t really understand how the insulin just shuts down like that. Are alpha cells involved somehow?
There is speculation that because it’s natural human regular insulin that’s entering the blood stream so rapidly that the liver is able to somewhat regulate its bioavailability… which is kind of how it works in a functional healthy metabolism… the pancreas doesn’t spurt out the exactly right amount of insulin, it just kinda kicks into gear and then the liver regulates it… that’s why they measure c peptide instead of insulin levels these days… because the liver can dispose of the excess insulin levels and clear them out of the bloodstream but not the c peptide levels… at least that’s my understanding
) Anyway, I asked for a sample and had to laugh at her response… She told me she no longer had any because she had dropped the rest in the trash. It was a long appointment, and by the time we got to that, I was fine with just an “okay, thanks”, but I’m thinking about a follow up email to hear a more detailed explanation. In a rush, she said that she and “many others” really didn’t like the doses and that there were just too many concerns. I know there are lots of people who seem to love it, and I absolutely get the appeal, but I’m curious what the endos are saying… So if anyone has asked before or is heading to their endo any time soon, I’d love to hear what they think about it…
