|
Post by zuegirdor on Apr 24, 2017 12:33:41 GMT -5
Slug, I think something like REAL TIME Glucose sensing watch with an alarm set at 100 and rising would nail it-eliminate the 20 minute lag of current interstitial sensing & any guesswork about a follow up. As long as the user can hear the alarm or feel the vibration it would almost exactly duplicate insulin response of pancreas (Pancreatic secretion is lower amplitude and higher frequency than Afrezza dosing and follow ups are "automatic"). Might be that overwhelming support by users or endos has to wait for the sensing tech to catch up? It would be almost effortless if we could trust our tech. Not to bash but, while fairly reliable, my family finds the current CGM tech a little frustrating at times. I wonder if this or the complete lack of CGM for some patients trying Afrezza is a partial explanation for low Refills? Zuegirdor, was it you that said you figured out how afrezza guy was dosing and cut the amount of afrezza being used as well? Did you say, you found taking the follow up dose as soon as levels begin to rise, keeps the blood glucose in tight control and cuts down the afrezza needed? Can you say more about what you have found?
When Apple gets the glucose sensing technology on that watch we all will have a reason to buy one. It will be fun. we can see what happens when we eat, what. Plus see what happens to our blood glucose when we exercise.
I have said that I realized the importance of staying in range, and using a LOWER RANGE target with Afrezza. Unfortunately the current tech will not alert a "high" below 120 and will not repeat the warning soon enough to avert a rise over 140. You have to be proactive to catch the rise over 105, which is our ideal (and possibly the threshold at which the pesky liver dump is invoked?)becuase you won't get an alarm. And if you do get an alarm you have to realize the lag (between interstitial and blood glucose levels) means the reading will still be 20 to 40 points too low! My son? Proactive? That is the issue. When he is, he uses half to a third less Afrezza. Delaying the first puff by about twenty minutes is also helpful.
|
|
|
Post by cjm18 on Apr 24, 2017 15:44:51 GMT -5
Zuegirdor, was it you that said you figured out how afrezza guy was dosing and cut the amount of afrezza being used as well? Did you say, you found taking the follow up dose as soon as levels begin to rise, keeps the blood glucose in tight control and cuts down the afrezza needed? Can you say more about what you have found?
When Apple gets the glucose sensing technology on that watch we all will have a reason to buy one. It will be fun. we can see what happens when we eat, what. Plus see what happens to our blood glucose when we exercise.
I have said that I realized the importance of staying in range, and using a LOWER RANGE target with Afrezza. Unfortunately the current tech will not alert a "high" below 120 and will not repeat the warning soon enough to avert a rise over 140. You have to be proactive to catch the rise over 105, which is our ideal (and possibly the threshold at which the pesky liver dump is invoked?)becuase you won't get an alarm. And if you do get an alarm you have to realize the lag (between interstitial and blood glucose levels) means the reading will still be 20 to 40 points too low! My son? Proactive? That is the issue. When he is, he uses half to a third less Afrezza. Delaying the first puff by about twenty minutes is also helpful. I have been reading your posts a lot lately. I can't help but think that the typical new afrezza patient is not having success because they aren't being proactive at all. I.e. They are taking 4u at the wrong time. The end result is using much more afrezza at higher cost and being out of range much more. Cgm seems like almost a requirement and still it's tough. Then the doctor blames afrezza and never prescribes the drug again. This has to be the culprit for the low refill rate.
|
|
|
Post by zuegirdor on Apr 24, 2017 17:13:22 GMT -5
I have said that I realized the importance of staying in range, and using a LOWER RANGE target with Afrezza. Unfortunately the current tech will not alert a "high" below 120 and will not repeat the warning soon enough to avert a rise over 140. You have to be proactive to catch the rise over 105, which is our ideal (and possibly the threshold at which the pesky liver dump is invoked?)becuase you won't get an alarm. And if you do get an alarm you have to realize the lag (between interstitial and blood glucose levels) means the reading will still be 20 to 40 points too low! My son? Proactive? That is the issue. When he is, he uses half to a third less Afrezza. Delaying the first puff by about twenty minutes is also helpful. I have been reading your posts a lot lately. I can't help but think that the typical new afrezza patient is not having success because they aren't being proactive at all. I.e. They are taking 4u at the wrong time. The end result is using much more afrezza at higher cost and being out of range much more. Cgm seems like almost a requirement and still it's tough. Then the doctor blames afrezza and never prescribes the drug again. This has to be the culprit for the low refill rate. Glad to share our experience and hope it provides some information but I would be careful about assuming our expereince is typical. I have come to the suspicion that my son is more insulin resistant than many other T1Ds. His coverage rate for Breakfast and Dinner is 5 or 6g Carbs per unit of Injected Insulin. He is often sedentary because he has a lot of homework and spends more time in front of a "screen" than I would like. When he is active his coverage is closer to 8 or 10g carbs per unit. He also likes to eat a lot of carbs (relative to other T1Ds that tend to avoid them). I think all of the above reflect on why perfect control eludes him. But he's still doing pretty well(last A1C=6.2), with fewer hypos and for less effort with Afrezza. The decision to continue use or not use after a first trial is complicated by many factors and expectations. There could be disappointment for those who are expecting to not have to be proactive while on Afrezza. You are still going to have to prick yourself for glucose testing and to take your basal. Its ironic that the worst thing about Afrezza for my son is that it has restored so much of the spontaneity he remembers from pre-diagnosis that he (seems to?) forget(s) he still needs to take insulin after a meal(let alone be proactive). Checks his blood sugar an hour later and he's at 280. No problem, puff 2 8us and hes back in range in under an hour and checking sugars for a follow up sometime after that. If it were easier to obtain I think more people who gave up too soon might give it another try if it was not so hard to get it in the first place.
|
|
|
Post by kc on Apr 24, 2017 17:26:07 GMT -5
That we've hired an investment bank to explore all options at this time to include selling the company. At least there'd be a morsel of hope that someone will buy us for ,say,$150 Mil and the pain and suffering would be over. It takes at least $1 Billion to get an FDA approved drug. We've got that. And our drug works in spades for those taking it...so someone with some deep pockets has to be interested for a song....or at least you'd think. Cowgirl, I first said this back in January 2016 when the Sanofi termination came up. I believe that a bidding war would happen and they would have gotten at least $15.00 to $20.00 back then. Today It might be a stretch to get even $10.00 post RS. There is value to having a FDA approved drug and they company should consider finding that Strategic operating partner who can help MannKind to Monetize Afrezza before bankruptcy.
|
|
naykitop
Newbie
Posts: 14
Sentiment: Long
|
Post by naykitop on Apr 24, 2017 19:29:08 GMT -5
No it does not "work in spades for those taking it". Very few have achieved good results. The proof is in the lack of refills of scripts. The claim that the cost is causing people not to refill is ridiculous. I wouldn't fill a script the first time if I knew I couldn't afford a refill. Would anyone? No I would not. But people are getting scripts, having good results, and then their insurance is saying no. You have to take another meal time first. ( Like they haven't already been doing that for years!) so if this is true, i'm afraid the company is fighting a fight they can't win. Insurance changes take a very long time, something we don't have.
|
|
|
Post by kc on Apr 24, 2017 19:51:59 GMT -5
No I would not. But people are getting scripts, having good results, and then their insurance is saying no. You have to take another meal time first. ( Like they haven't already been doing that for years!) so if this is true, i'm afraid the company is fighting a fight they can't win. Insurance changes take a very long time, something we don't have. The company needs to be sold in its entirety or 50% to a strategic operating partner (somebody who will run and manage the company) with enough cash and patience to monetize Afrezza properly. The product is a winner but if you don't have money to survive you will go bankrupt and nobody wins. Hopefully the board of directors is not that blind or stupid to see this situation. MannKind will not survive without 200 million in capital to have a 2 year marketing runway. It does not take a Wharton MBA to figure this out.
|
|
|
Post by sportsrancho on Apr 24, 2017 20:31:54 GMT -5
so if this is true, i'm afraid the company is fighting a fight they can't win. Insurance changes take a very long time, something we don't have. The company needs to be sold in its entirety or 50% to a strategic operating partner (somebody who will run and manage the company) with enough cash and patience to monetize Afrezza properly. The product is a winner but if you don't have money to survive you will go bankrupt and nobody wins. Hopefully the board of directors is not that blind or stupid to see this situation. MannKind will not survive without 200 million in capital to have a 2 year marketing runway. It does not take a Wharton MBA to figure this out. Some think the deals already done. Putting that aside, maybe the plan is to prove that 200 million will do the trick. And in the next few months they just may do that:-) Which could increase the bids. I'm sure they have a price in mind. I know it's risky kc. But I do think they want the best for all. And the Mann family wants to come out whole.
|
|
|
Post by sellhighdrinklow on Apr 24, 2017 23:22:41 GMT -5
Slug, I think something like REAL TIME Glucose sensing watch with an alarm set at 100 and rising would nail it-eliminate the 20 minute lag of current interstitial sensing & any guesswork about a follow up. As long as the user can hear the alarm or feel the vibration it would almost exactly duplicate insulin response of pancreas (Pancreatic secretion is lower amplitude and higher frequency than Afrezza dosing and follow ups are "automatic"). Might be that overwhelming support by users or endos has to wait for the sensing tech to catch up? It would be almost effortless if we could trust our tech. Not to bash but, while fairly reliable, my family finds the current CGM tech a little frustrating at times. I wonder if this or the complete lack of CGM for some patients trying Afrezza is a partial explanation for low Refills? Compression lows anyone? If you lie on the sensor it tends to think you are lower than you are and alarming. This can be offset by your body blocking the signal to the receiver so it doesn't notice that it is misreading This is before we get to trying to get the thing back on track after it has wandered off... I sleep on my stomach all the time and had Dexcom units for 4+ years. What you say I have never experienced.
|
|
|
Post by agedhippie on Apr 25, 2017 7:22:14 GMT -5
Compression lows anyone? If you lie on the sensor it tends to think you are lower than you are and alarming. This can be offset by your body blocking the signal to the receiver so it doesn't notice that it is misreading This is before we get to trying to get the thing back on track after it has wandered off... I sleep on my stomach all the time and had Dexcom units for 4+ years. What you say I have never experienced. Then you are lucky . Google compression lows dexcom. Dexcom even tell you not to insert into an area that is likely to be compressed.
|
|