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Post by sayhey24 on Jul 29, 2019 17:50:54 GMT -5
"If you took a bit too much, no worries as the liver will kick in and get to work." Posts all over the fb group about people taking too much and needing 2u doses. Even huge fans of Afrezza acknowledge this. "Not only is afrezza highly predictable" Current top post on the fb group begs to differ. And from someone who has done the holy grail of Tresiba/Afrezza hydration still matters. Just FYI. I'm really curious where you get your info because just about every real world case out their differs from what you say. The shutting off liver + ease of dosing I do agree with. If there were no issues with Afrezza/Tresiba I'd be on it right now. I'd love love love to not be on a pump. I'd love for diabetes to be simple and keep my huge TIR. I'd love to just inhale and forget, to sleep through the night because of magic but it's just not the case. An X-small would be a nice addition to the afrezza line-up. This has been discussed on this board for years. It will be interesting to see how the kids make out in the studies but the cost of setting up another filling line for the market is the issue. For those that are high end afrezza users they usually know how to split the cartridge. Now - when you get into Tresiba/Afrezza hydration, its the subq factor which is the issue. If you want to add a second variable add in an RAA for breakfast, then another variable for lunch and dinner. As Al Mann said for the T2 afrezza is really easy, for the T1 it still takes a little care but nothing like current subq. I would recommend watching the entire video put if you want the cliff notes version start at the 33 minute mark. www.youtube.com/watch?v=muBuxTqxmQo
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Post by kc on Jul 29, 2019 18:02:00 GMT -5
For the T1s, its a head scratcher to me why anyone still wants to play the guessing game and jam themselves three times a day only to play Russia roulette with hypoglycemia. Then again I was one who was buying Libres on ebay from Europe before they were approved in the U.S. and more than one person told me I was crazy because I didn't want to keep sticking my fingers. As usual, the lack of understanding of T1DM on this forum astounds me. If I understood this disease the way you all do Afrezza would be the obvious choice! Shawn you hit on exactly why we are having a difficult time merchandising afrezza. Nobody understands the disease especially the endocrinologist who are prescribing Insulin.
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Post by shawnonafrezza on Jul 29, 2019 18:03:45 GMT -5
I've been looking for some of the old videos, any chance you have some talk he did in November 2014? I was told it's good but that's all I know about it. Because you always need a basal as T1 the hydration between tresiba/afrezza doesn't matter to me. I'd still say it's the afrezza because all the tresiba is absorbed at once and slowly release. As usual, the lack of understanding of T1DM on this forum astounds me. If I understood this disease the way you all do Afrezza would be the obvious choice! Shawn you hit on exactly why we are having a difficult time merchandising afrezza. Nobody understands the disease especially the endocrinologist who are prescribing Insulin. No arguments there. Most endos can't keep up with me.
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Post by mnholdem on Jul 29, 2019 18:20:32 GMT -5
"If you took a bit too much, no worries as the liver will kick in and get to work." Posts all over the fb group about people taking too much and needing 2u doses. Even huge fans of Afrezza acknowledge this. "Not only is afrezza highly predictable" Current top post on the fb group begs to differ. And from someone who has done the holy grail of Tresiba/Afrezza hydration still matters. Just FYI. I'm really curious where you get your info because just about every real world case out their differs from what you say. The shutting off liver + ease of dosing I do agree with. If there were no issues with Afrezza/Tresiba I'd be on it right now. I'd love love love to not be on a pump. I'd love for diabetes to be simple and keep my huge TIR. I'd love to just inhale and forget, to sleep through the night because of magic but it's just not the case. I do agree that there are various aspects to maintaining tight control of blood sugars and that there are many variables. That said, I think what is overlooked is the importance of not having to wonder how much insulin is still at work. Afrezza's short duration has significant advantages (and less significant disadvantages) that have yet to be adequately communicated to the medical community.
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Post by sayhey24 on Jul 29, 2019 18:37:26 GMT -5
Shawflynn - "old videos, any chance you have some talk he did in November 2014?"
By November 2014 Al was getting pretty sick. By May 2015 at the ASM he needed help getting from the car into the plant. What was the topic of his presentation? The last video I remember is ADA2014 at an awards dinner which was a whos who in the diabetes community. It has been removed from youtube.
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Post by sellhighdrinklow on Jul 29, 2019 18:50:06 GMT -5
For the T1s, its a head scratcher to me why anyone still wants to play the guessing game and jam themselves three times a day only to play Russia roulette with hypoglycemia. Then again I was one who was buying Libres on ebay from Europe before they were approved in the U.S. and more than one person told me I was crazy because I didn't want to keep sticking my fingers. As usual, the lack of understanding of T1DM on this forum astounds me. If I understood this disease the way you all do Afrezza would be the obvious choice! It should be the obvious choice. I say that as a Type 1, 42- years and Afrezza user 4.5 years.
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Post by shawnonafrezza on Jul 29, 2019 18:51:17 GMT -5
"If you took a bit too much, no worries as the liver will kick in and get to work." Posts all over the fb group about people taking too much and needing 2u doses. Even huge fans of Afrezza acknowledge this. "Not only is afrezza highly predictable" Current top post on the fb group begs to differ. And from someone who has done the holy grail of Tresiba/Afrezza hydration still matters. Just FYI. I'm really curious where you get your info because just about every real world case out their differs from what you say. The shutting off liver + ease of dosing I do agree with. If there were no issues with Afrezza/Tresiba I'd be on it right now. I'd love love love to not be on a pump. I'd love for diabetes to be simple and keep my huge TIR. I'd love to just inhale and forget, to sleep through the night because of magic but it's just not the case. I do agree that there are various aspects to maintaining tight control of blood sugars and that there are many variables. That said, I think what is overlooked is the importance of not having to wonder how much insulin is still at work. Afrezza's short duration has significant advantages (and less significant disadvantages) that have yet to be adequately communicated to the medical community. It depends on what you consider an advantage or disadvantage. For example, if IOB is your go to every insulin pump and now the smart pen will track IOB for you. Is it the same no, but convince others of that with hard evidence. For what you consider a significant disadvantage of the rapid out I've been pretty vocal that it is a very significant disadvantage. You trade not having to worry about how much insulin is still working to the though of "when do I need to dose next". Out of the frying pan... In the end, advantages and disadvantages are for the PWD to decide and unfortunately Mannkind isn't pushing with hard evidence or at least not trying to push out ways to meet users needs that aren't directly met. Shawflynn - "old videos, any chance you have some talk he did in November 2014?" By November 2014 Al was getting pretty sick. By May 2015 at the ASM he needed help getting from the car into the plant. What was the topic of his presentation? The last video I remember is ADA2014 at an awards dinner which was a whos who in the diabetes community. It has been removed from youtube. No idea, I just heard from some people in old message boards that that was the talk that something convinced them. I don't think they're active anymore because they didn't respond and I did see that's when he was sick so it seemed weird. As usual, the lack of understanding of T1DM on this forum astounds me. If I understood this disease the way you all do Afrezza would be the obvious choice! It should be the obvious choice. I say that as a Type 1, 42- years and Afrezza user 4.5 years. Do you have a Nightscout site or dexcom clarity to back that? I don't mean it as an attack, I mean it as a walk the walk kind of thing. I only ever see graphs users post, only AfrezzaUser posts full reports.
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Post by sayhey24 on Jul 29, 2019 19:33:09 GMT -5
Shawnflynn - I am not sure what you are saying but you seem a bit confused "For what you consider a significant disadvantage of the rapid out I've been pretty vocal that it is a very significant disadvantage. You trade not having to worry about how much insulin is still working to the though of "when do I need to dose next". Out of the frying pan..."
Those understanding diabetes have been in search of the holy grail of insulin for nearly 100 years which is an insulin which mimics pancreatic insulin. afrezza is it and few find "fast out" a disadvantage. Second dosing with a CGM is a nobrainer.
If you are trying to keep tight control and under dose or the meal takes a long time to digest and you go to 250, this is significantly different than going low to 25. 250 may not be optimal buts its no frying pan. 25 however is the fire and why insulin is that last step in ADA's T2 SOC and not the first. If the risk of hypos with subq was very low like with afrezza, insulin would be step 1 for T2s and there would be no antiglycemics.
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Post by shawnonafrezza on Jul 29, 2019 19:39:48 GMT -5
If you think 250 is "not optimal" then you don't know me. I think 160 is not optimal, hell 120 is a correctable bgl. A follow up dose is a nobrainer, agreed, and also a disadvantage. On pumps I don't follow up dose. I deal with food at meal and that is that.
I've only had one reading as low as 32 in 14 years with this disease and I'd attribute it more to a lack of CGM than RAA.
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Post by sellhighdrinklow on Jul 29, 2019 20:15:37 GMT -5
I do agree that there are various aspects to maintaining tight control of blood sugars and that there are many variables. That said, I think what is overlooked is the importance of not having to wonder how much insulin is still at work. Afrezza's short duration has significant advantages (and less significant disadvantages) that have yet to be adequately communicated to the medical community. It depends on what you consider an advantage or disadvantage. For example, if IOB is your go to every insulin pump and now the smart pen will track IOB for you. Is it the same no, but convince others of that with hard evidence. For what you consider a significant disadvantage of the rapid out I've been pretty vocal that it is a very significant disadvantage. You trade not having to worry about how much insulin is still working to the though of "when do I need to dose next". Out of the frying pan... In the end, advantages and disadvantages are for the PWD to decide and unfortunately Mannkind isn't pushing with hard evidence or at least not trying to push out ways to meet users needs that aren't directly met. Shawflynn - "old videos, any chance you have some talk he did in November 2014?" By November 2014 Al was getting pretty sick. By May 2015 at the ASM he needed help getting from the car into the plant. What was the topic of his presentation? The last video I remember is ADA2014 at an awards dinner which was a whos who in the diabetes community. It has been removed from youtube. No idea, I just heard from some people in old message boards that that was the talk that something convinced them. I don't think they're active anymore because they didn't respond and I did see that's when he was sick so it seemed weird. It should be the obvious choice. I say that as a Type 1, 42- years and Afrezza user 4.5 years. Do you have a Nightscout site or dexcom clarity to back that? I don't mean it as an attack, I mean it as a walk the walk kind of thing. I only ever see graphs users post, only AfrezzaUser posts full reports. I have a Dexcom 5. I don't know what Dexcom Clarity is. Breaking an 8 cartridge ( I don't say units) into four, 2 cartridges is a key, I've recently discovered. Latest A1C, 5.5 . Highest in last year, 5.8. Afrezza is Magic powder in my opinion. A1C prior to Afrezza was 6.6 +/-...can't recall exactly. My life as a diabetic is much, much, much easier. Maybe I should have added one more, "much".
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Post by agedhippie on Jul 29, 2019 22:01:24 GMT -5
Aged - you raised an interesting point and I tried to do a little research today on why Abbott has encrypted the new Libres. Some people thought security might be the reason but there seems to be potentially a more interesting reason. It is looking like Abbott is setting themselves up to provide a monitoring service and maybe limiting the potential for competition. I guess we will just need to wait and see how true this is. Ondou has been around for about 3 years now and it has never been clear what they are doing except working insurance companies to get coverage. Time will tell, hopefully sooner than later. I can tell you when you could use Glimp the readings were much more accurate once you calibrated the software. I have not bought a Libre in a while as my BG levels are highly predictable now and I only check every once in awhile. I got as far as downloading Glimp before I found out that the encryption killed it. I think encryption is to prevent unauthorized devices like the bluetooth add-ons. The FDA is getting twitchy about all the technology hacks people are doing and now the US has the only encrypted sensors, everywhere else the sensors are unencrypted. I would love to be able to calibrate the Libre.
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Post by sayhey24 on Jul 30, 2019 3:05:07 GMT -5
Aged - its clearly not an FDA concern as its already an approved product. Additionally you need to be within a foot to get a reading unlike the G6 which is just broadcasting. My guy said Abbott has plans beyond the sensor. We will see but things take longer than I would like. Heck, I have been waiting for RLS for 3 years.
If you have a friend in Europe have them send you a ten pack. I don't see them on ebay anymore which I find interesting. I only see the pro version but have to search under flash glucose monitoring which is interesting.
Assuming you are paying out of pocket since you already have the dexcom, the cost should not be significantly different. Properly calibrated with Glimp the readings were spot on.
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Post by agedhippie on Jul 30, 2019 8:42:13 GMT -5
Aged - its clearly not an FDA concern as its already an approved product. Additionally you need to be within a foot to get a reading unlike the G6 which is just broadcasting. My guy said Abbott has plans beyond the sensor. We will see but things take longer than I would like. Heck, I have been waiting for RLS for 3 years. If you have a friend in Europe have them send you a ten pack. I don't see them on ebay anymore which I find interesting. I only see the pro version but have to search under flash glucose monitoring which is interesting. Assuming you are paying out of pocket since you already have the dexcom, the cost should not be significantly different. Properly calibrated with Glimp the readings were spot on. Actually I am getting them on my insurance. My endo did something strange and I get them instead of strips which works for me because I always buy strips out of pocket because I don't like One Touch which is the only one my insurer covers. Allegedly the Miao Miao 2 works with the Libre 2 and the US Libre 1 sensors. The MM2 isn't released until August, but if it works I will probably buy it. (The Miao Miao converts a Flash CGM like the Libre to a full CGM like the Dexcom)
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Post by sayhey24 on Jul 30, 2019 19:07:04 GMT -5
Aged - good luck with the MiaoMiao. I am not sure how they are getting the key value stored in the sensor without a deal with Abbott. Back in the day I had a similar prototype which I thought was going to get seed funding through UPenn. I never saw it as a huge long term market and I had a feeling Abbott was up to something so I did not have the passion when the UPenn funding was not offered. The reality was to read the CGM value you had to hold the reader anyway and swiping it was not a big deal. Since afrezza users don't usually get lows while sleeping, alarming had little value. However the best competition at the time was www.ambrosiasys.com/ It does not look like they are reading the encrypted sensors. Let us know if they ever come out with a product - their website says "coming soon". Usually that means never coming.
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Post by agedhippie on Jul 30, 2019 20:55:44 GMT -5
Aged - good luck with the MiaoMiao. I am not sure how they are getting the key value stored in the sensor without a deal with Abbott. Back in the day I had a similar prototype which I thought was going to get seed funding through UPenn. I never saw it as a huge long term market and I had a feeling Abbott was up to something so I did not have the passion when the UPenn funding was not offered. The reality was to read the CGM value you had to hold the reader anyway and swiping it was not a big deal. Since afrezza users don't usually get lows while sleeping, alarming had little value. However the best competition at the time was www.ambrosiasys.com/ It does not look like they are reading the encrypted sensors. Let us know if they ever come out with a product - their website says "coming soon". Usually that means never coming. MiaoMiao is generally thought of as the best of the bluetooth add-ons. My reason for wanting it is that it works with xDrip so I get all the nice features I have got used to, and that I can calibrate it. I had a mildly frustrating call with Abbott's support team in which they basically said there was nothing that could be done. Researching this it seems to be a problem and allegedly the Libre 2 is more accurate. One thing I did learn was that asprin poisons the sensor for 3.5 hours and you get artificially high reading. Vitamin C has the opposite effect (artificially low).
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