Mark - just catching up on your post. Man, that sucks and I'm sure very frustrating. My bigger concern is the fact that your Dr. is putting himself before you. I'm sure he has many patients on MDI, pumps etc and they are less than perfect. Does that mean that every patient who is struggling (we all do) makes him "look bad" and are a ding to his reputation? As others have suggested, I think it's time to find a new Endo.
Good luck to you.
Yes, well said. Forget Afrezza -- this endo would be a real thorn in my side, resisting at every turn my diabetes management. A good example of the old school, "good enough" treatment approach.
Never mind that, for the patient, there are things like simply living life in the mix too.
I just had someone on Afrezza tell me that their CGM has a hard time keeping up with Afrezza's quick action when they use Afrezza to correct highs. ie G4 shows them a value still 50+ points higher than a finger stick for 20-30 minutes until it catches up. I didn't think to ask if they were on the new G4AP software or not.
Have any of you on Afrezza and Dexcom G4AP noticed trouble with the CGM keep up during times of rapid drops with Afrezza?
I donât currently use a Cgm but I have in the past. This makes perfect sense to me, a Cgm is not actually in real time, there is a significant delay and a time averaging effect. Things happen so fast with afrezza I donât think the Cgm would register ultra rapid spikes or corrections near as well as multiple tests with a meter-- like I highlighted last night. CGM is a great tool but would have some real limitations keeping up with afrezza in my opinion⌠Even more importantly, insulin management is so much easier with afrezza that I think many users would no longer feel a Cgm is justified, again thatâs just my opinion.
Please look at this link from Sam...I will always use him as an example. CGM and finger prick seems pretty close to me http://afrezzauser.com/testing-the-limits-of-afrezza-unbelievable/. He is doing a side by side comparison with his finger pricks and CGM while taking Afrezza with out any carbs. At one point the CGM and meter or off 14 points all other times with in 4 to 5 points I would call that very close. Even my daughters CGM Dexcom G4 is very good. This morning she was rising CGM 267 finger prick 263. Not sure how much closer it could be. I have even seen her glucose meter be WAY off on two different readings not even 1 minute a part. The only time I see a delay maybe when I have to calibrate her CGM and the numbers is off, the adjustment time can take up to 20 minutes.
Mark,
Did you ask you're Endo what other new drugs they would not Rx. There is major group think at the top teaching Hospitals in NY, Philly, etc. Someone at Jeff has told a similar story about the endos their. These hospitals get heavily pressed by reps, docs and scientists, as well as executives from the big Diabetes firms, and in some cases the Hospitals and Universities share Board members with the corporations. The Hospital will have a preferred formulary in many cases as well. You should ask for a copy.
But in the end, if a doctor has his own career and business interests ahead of your health and quality of life, you probably are doing the right thing by moving on. Many of the best docs are in private practices anyway.
If he actually told you Afrezza presented an increased risk of hypos and broncial spasms, especially if you don't have lung disease, he either didn't read the trials outcome data, is just repeating the company line, or may even be incompetent. Hope you get somebody with your interests at heart and good luck.
I'd suggest, based on my own experiences, that his readings are much closer in this experiment than they'd be if he had actually eaten a bunch of carbohydrates and dosed insulin.... It's when insulin is pushing things one way, and digestion another, that CGMs just can't keep up. They can be very accurate... but they aren't in real time. A meter will always show a spike happenining long before a CGM can detect it, or a drop for that matter too, but of course the problem is that its only a snapshot in time, and therefore can miss a lot of the bigger picture. Try the experiment with your daughter.... test her every 10 minutes after she's eaten sometime (obviously not practical to do very often) Doing this I'd often see things the CGM missed. You can even see in the other Sam's notes that when his BG started to rise again according to his meter at 12:46-- the CGM couldn't figure that it was rising until 1:02
Perhaps someone can start a new thread listing doctors and hospitals where Afrezza is being prescribed. It could be very helpful to many who are reading this forum.
Also, there is an internist in the West Village who is not an endo but did some work with Exubera and is aware of Afrezza. He might also know an endo he can recommend:
Dr. Robert Fafalak
36 W 9th St, New York, NY 10011
(212) 933-0072
"I have even seen her glucose meter be WAY off on two different readings not even 1 minute a part." So again finger pricks are not always accurate I have seen those off by 50 plus points. One night I prick her finger three times only in end to get what I hope was a correct reading. Which was closer to the CGM reading by the way. I would say 350, than 290 and than 230 something with in a minute or so on a glucose meter is not accurate either. NO carbs just sleeping and even consumers reports, no skin in the game. Stated the meters accuracy are not as accurate as advertised. I even had the glucose meter display the dreadful low number before and 22 and etc only to find it was WAY off.
I donât recommend that. Good doctors prescribe the meds that are appropriate for individual patients⌠And I donât think theyâll be too impressed if patients start showing up saying, âbut I read on the Internet that you prescribe afrezzaâ. Or any other drug for that matter. I donât want to see a backlashâŚ
Mark, also, given your already in good control, just go talk to your GP. If he/she is not in the same group they may provide you with an Rx.
At some point, patients are going to have to find doctors that prescribe Afrezza. This is more about the patient's needs than the feelings of doctors. Either a patient will have to call around and ask "the" question or find out in some other way. In any event, doctors should know that there are patients who want to use Afrezza.
Meters are far from perfect too, and their readings can be way off⌠But the reality is glucose levels donât change in interstitial fluid, where the Cgm is, anywhere near as fast as they do in blood. Thatâs why even with a perfect 100% accurate Cgm there will always be a time delay. I think that time delay becomes more significant when talking about afrezza than it ever has been before with other Rapids
Cornel Medical is a top rated hospital in NYC and in the country. The doctors who work there are highly sensitive to their reputations. Probably better to move on to another endo with a private practice.
Cornel will be one of the slow changers.
Nice. A good result.
I agree the word needs to get out but let it happen naturally. Results speak for themselves, it just takes time. Doctors despise the assumption that because they RX something for one patient that it's a given for any other. Think of it in the context of any other drug, "Hello I'm considering being your patient, do you prescribe anti depressants? How about ACE inhibitors? But I read on the internet that you do" If the perception becomes that afrezza is a bunch of internet driven hype instead of the amazing med that it actually is then doctors will want nothing to do with prescribing it.... then we all lose.
Thanks Terry and Dave. Appreciate your thoughts and reassurance
Two things I forgot to mention in my original post:
First, when he called me back and told me he spoke with his colleagues, I asked him if any of them had done substantial research on Afrezza. His response made my head spin...it was something to the effect of "we don't need research Afrezza in order to know that it's not an appropriate treatment for you". I then offered to email him a few articles that I thought would be helpful, he told me it's not necessary. That was the clincher for me.
Second, he did bring up at least two fairly valid concerns that I wasn't sure how to address, and which may come up again :
A) That the results of the studies were less-than-stellar (as already discussed earlier in this thread)
B) He also brought up something that I had actually asked about earlier in this thread on page 44. He referenced Figure 3 in the Afrezza package insert (below), specifically the notation below the charts which states "Despite the faster absorption of insulin (PK) from Afrezza, the onset of activity (PD) was comparable to insulin lispro." His interpretation of this was that Afrezza would not lower blood sugar faster than Humalog (which is what I'm using now). Obviously, this can't be correct, or else this whole thread is a farce. Can anyone help reconcile this for me?
Thank you everyone who responded and gave advice, it's been a huge help. Beautiful example of why I value this community so much
So you would agree for the most part it was accurate. I find it interesting you left out that fact. How reliable is was for the most part. So when it was on the up swing there was a delay. Still you have to admit it was pretty accurate for the most part.