I don’t think the problem is with your suggestion of using samples. I think your response to statements about the drug company’s own warnings and the concern that some expressed about the drug came across as:
Your statements also weren’t coached in the phrases of “this is my opinion” or “i think …”. Your statements were posted with word indicating – at least to me – that these were medical facts. You may have more experience with T1 than many others who are coming to this Tu’D or this forum for the first time. Your statements could mislead a newbie into thinking the warnings are to be ignored.
It’s a prescription drug. As with all prescription drug there are potential side effects and counter indications. Your doctors job is to weigh the potential benefits vs the potential risks. One of the most valuable ways of determining potential benefits is by offering samples… It’s not a big deal to do an fev1 spirometry… Like I said that’s what the 1 stands for-- 1 second, and they can be done by a medical Assistant with a handheld device that costs next to nothing.- that is all that is recommended prior to prescribing. heck you can buy this device for $29.99 on eBay and give yourself an fev1 spirometry eBay . Neither I or my doctor felt an fev1 even remotely meaningful to rule out any unknown lung problems, so after we decided that if this medication offered substantial benefit to managing my diabetes we decided to do a very substantial (and costly) full pulmonary function test and DLCO with a pulmonologist and very sophisticated equipment…
I’m not sure why I feel the need to justify any of this to you.
I wouldn’t trade that kind of quality thoughtful care in a million years for some clown who just brainlessly makes me do a worthless fev1 before prescribing. Maybe you should get a new doctor if that’s the level of care you are accustomed to.
Hi Khurt,
That’s a pretty brazen statement “I know it won’t work”. I’m certainly not telling you what do, your treatment is your choice, no one knows whats best for you better then you do, but I think what you wanted to say was “It’s not the right solution for me”. Saying it doesn’t work is telling others that this drug is a fraud, which is a total inaccurate and miss-leading statement. Let’s stick to the facts.
Statement was clear, have asma can’t use it. I’m still upset that my lungs have allways been good but I too can’t use it. It doesn’t work. Of course those who it does work for it does work. It doesn’t make sense why my lungs can’t take it and other lungs can take it. Does that make sense? No it doesn’t. It doesn’t make sense. Why? Why me? It’s not fair. I hate stuff and things and unfair stuff. There is so much suffering. It works but only when the lungs stop working. Air or good bg. But not both. This edit more accurately expresses my opinion thanks for your patience @mpg54
In my opinion you misrepresented your meaning. You should have said, “It’s not the right solution for me”.
Whether that was your intention or not is beyond me.
i am not the person who posted this comment or the other ones like it. i only am questioning the drug and the experiences others have had who have used Afrezza. i don’t know how you have gotten the idea that these unsupportive comments are coming from me.
the person who posted this site about Afrezza. i have never even tried the medicine. i have no opinions about it. i am just curious about peoples experience w/ it.
Aaron, please help me to understand what was offensive in any of my statements? I think all my comments were clear and respectful. I haven’t ignored anything. In this thread I thought Kurt’s comment in saying “I know it won’t work.” can easily be taken out of context. I had to read it twice to understand what he mean’t. He should have said “It’s not the right solution for me”, which is what I think he meant, or at least hope he mean’t.
I certainly haven’t attacked you in anyway, and thanked you for your candid feedback. I have made it quite clear that I’m not telling anyone what they should do for their treatment. I’m here because I’m interested in how this drug is working, good and bad. I want to hear it all. This is an open forum, and I’ll join in as much as I want.
thanks for clearing up the confusion. for some reason, i keep getting these responses on my email, and i thought that they are in response to something i had stated , when in fact i know that i did not. i feel like i was the one who started this whole controversy. i was only asking what people on TuD had experienced w/ this relatively new drug and how they felt about it. i never meant for anyone to go head-to-head.
best of luck to you. i am now very curious about it, and as i am seeing my endo this coming wednesday, i have a million questions i am prepared, now, to ask him, as well as my cde.
Might I suggest
The comment whoever directed to has been flagged as inappropriate.
Suggest an appropriate post would be about your experiences living with diabetes.
Perhaps you expect to be criticised and corrected if you talk about yourself. But I think we can all take an attitude of letting people express their thoughts and ideas and memories in their own way. You should have no fear of being berated as that would expressly oppose the purpose of this forum. And if some one does berate another they should be corrected and given ample opportunity to adjust to communicating in a forum in which people are honored for their unique ways.
Fair enough Aaron, I’ve seen a lot worse here. Interested in hearing and learning more about your experience with Afrezza and whether or not it will be something you’ll continue with in the future given the problems you’ve had with the cough. Thanks
Well, You want an example of offending statements? “Blah blah blah weird Aaron” might be labeled name calling. “I know you are but what am I” would be offensive. What offended me was a refusal to acknowledge the lungs issue. Try on this scenario:
I love the effect of a new medicine. I waited eagerly for it to become available. I began using it and it fulfilled all my expectations. And then my lungs wouldn’t take it. I was devastated. My hopes and expectations for renewed energy and a more normal life were shattered. So I posted that my cough was so bad I had to stop taking Afrezza. And someone comments that I shouldn’t have any lung problem.
Yes, you said “So let us not be hurt by mpg54. Rather let us hurt for her or him.” to me this is a strange/weird comment. That’s offending Aaron! I made NO such statement to you.
Here is my original statement to you on Mike’s thread.
“Hi Aaron,
I’m still here. I understand and appreciate your feedback, I’m just re-posting things I’ve read from others. I can’t claim any personnel experience with Afrezza, nor do I try to tell others how to treat themselves. It’s good to hear that you are still positive about it as a treatment despite the cough. I wonder how often this occurs as you and Mike seem to have a similar experience, yet Sam does not.
Thanks.”
I fail to see where I’m ignoring the lung issues? In fact I said “I appreciated your feedback”. Not sure why your trying to twist into something else?
I did not ignore Khurt’s statement either, I said he should have used better wording to describe his thoughts on Afrezza. Why you feel the need to attack me is beyond my comprehension, and I have no interest in attacking you. Thanks.
I can’t figure out what you are doing here mpg54. Are you diabetic? What exactly is your interest in this product. It does appear that you are intent on promoting it and your way of doing so is by promoting argument…I see attempts of this with me, Aaron, Jenny, Khurt. All solid members here. I think you are running out of gas. Some of us just want to be sure that our diabetic friends receive the best advice and information available. My thoughts about Afrezza are based on the many DOC reports of folks walking out with samples without having the prescribed testing.
@ Daisy Mae - you could edit your profile so you don’t get notifications by email on this gig. And please let us know what your endo / cde say when they load you up with Afrezza samples
Hi Karen,
I’m interested in the drug and if it’s a viable treatment, that’s all I feel I need to share. I’m not promoting anything, looking for honest experiences with it. Good and bad. This forum seems to be a great place for that. Not sure what you mean by running out of gas? I didn’t here come to argue. I certainly have NOT told anyone to use this drug. I find it very strange that people here keep implying this. There seems to be some weird paranoia associated with it. This is an ‘open’ forum and I won’t be run off for being respectful and honest with my comments. Sam and Mike have been great in sharing their experiences. Aaron was also, then started down another path, still not sure why. I certainly did NOT dismiss his experience. Please read my post Karen, I think you’ll find all my comments are respectful and have NO promotion in them. I’ve re-stated what I’ve heard from others, and made it very clear every time.
Thanks.
There certainly is some bizarre paranoia associated with it… I haven’t figured it out either… Search this site all u want for people who have no personal interest in any other drug cutting and pasting it’s prescribing guidelines and warnings and debating them ad naseum or making proclamations about what doctors are or aren’t allowed to do in their practice of medicine… You won’t find it. I really don’t get it. I actually almost feel like some people are even upset or resentful about the kind of spectacular results I’ve been having with it.
I’d be much more happy to talk about results.
Last night I ate turkey, stuffing, asparagus, mashed potatoes and a small salad. My BG went from 78 to 118 at 2 hours and then back down with 8u of afrezz timed at 20 min.
Lunch today I had a BLT and a salad with nuts and craisins in it and went from 69 to 76 after an hour-- stayed at 76 at 2 hours also. Also with an 8u at 20 minutes.
I did not bother to count carbs for either of those meals. Those are spectacular, amazing, blood sugars of someone who doesn’t even have diabetes… And more importantly to me, I did it effortlessly.
By the way it was mpg54 who referred me to the recommendation to drink water before and after inhaling it… Which has actually been very helpful to me… So I welcome them into any conversation about it because he/she has contributed a lot more to my experiences with it than any of you, except mike, Terry, and Aaron… Who all actually used it and shared their actual results, not just bickered about it.
I’d be happy to discuss more about my experiences with it with anyone who actually is interested in the drug and not just here to stir the pot.
And so some of us are telling what we think of it. I think it works wonders for folks that it works wonders for, and YAY for them. But I am very aware of distribution of this drug without folks receiving the recommended prescribing procedures and information. I think that is not okay.
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