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Post by rockstarrick on May 28, 2015 13:20:20 GMT -5
I need advice for a friend who is a new Afrezza user, I am asking for privacy on his behalf. Thanks
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Post by Deleted on May 28, 2015 13:29:42 GMT -5
may be quicker response in twitter.. you can finds lots of them
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Post by kc on May 28, 2015 13:41:37 GMT -5
Rick is he a T1 or T2. There are many helpful users as stated above on Twitter but also on this site.
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Post by rockstarrick on May 28, 2015 14:06:40 GMT -5
He is T2, he doesn't use Twitter and doesn't spend much time online so I told him I would try to help him out. Spiro was helping me but he is on a well deserved vacation. Thanks
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Post by Deleted on May 28, 2015 14:09:12 GMT -5
He is T2, he doesn't use Twitter and doesn't spend much time online so I told him I would try to help him out. Spiro was helping me but he is on a well deserved vacation. Thanks email Sam --> afrezzauser@gmail.com afrezzauser.com/ |
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Post by rockstarrick on May 28, 2015 14:19:13 GMT -5
I did, I know this is probably a very hard time for him, so I don't expect to hear back anytime soon. Thanks
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Post by rockstarrick on Jun 1, 2015 10:26:23 GMT -5
I did get a reply from Sam and as usual, he was great help.
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Post by Deleted on Jun 1, 2015 10:30:49 GMT -5
I did get a reply from Sam and as usual, he was great help. Thats great Rick. Can you tell us a little bit more of your friend? 1)Type 1 or type 2 ? -- Type 2. 2) What were they on before Afrezza.. 3)If they requested for Afrezza or the doc recommended 4) How long did it take to get the rx.. Thanks in advance |
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Post by rockstarrick on Jun 2, 2015 10:56:12 GMT -5
#1, he is T2
#2. He was on humalog
#3. I believe it was mutual, the Dr had the samples,and he wasn't doing very well with humalog so they decided on Afrezza.
#4. The script was filled immediately after the sample pack (1). Was gone.
The problem he was experiencing was not all the product was making it out of the inhaler and into his lungs, this was causing sub par results and causing a flem build up in his throat.
This was caused by the fact that sample packs are all 4 unit cartridges which he developed a successful way to time and inhale 4 units and was seeing great BG numbers, he loved it.
After receiving his prescription he started inhaling 8 unit cartridges with the suction force as the 4 unit. I guess it would make sense that if there is twice as much product in a cartridge, you would need to inhale twice as hard, or twice as long to get the same results as the 4 unit.
I did reach out to MNKD last week and yesterday received a call from the actual designer of the a Dreamboat, he was very helpful in identifying the problem, very receptive, and concerned. We did come to the conclusion that his problem was a technique related issue, and nothing was wrong with the inhaler. He also shared a number to call if anybody receives a faulty inhaler. The number is 1-800-633-1610.
My friend,(Ray) is now linked with Sam Finta, I asked Ray if I could share his number with Sam and within minutes of sharing his number, Sam called him.
Sam is an amazingly caring person, Ray actually called me back to tell me how nice and very knowledgable Sam was.
After getting this issue resolved, I asked permission to post it for discussion,so here it is.
I asked Sam to get Ray into the A1c challenge, I don't know if Ray is the type to participate in something like that.
Regardless, through Sam Finta, Mannkind and Proboards, we were able to identify the problem and get it fixed quick.
Thanks to all who replied privately and in this thread.
Rock
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Post by Deleted on Jun 2, 2015 11:03:25 GMT -5
Thats great Rick..And Sam is awesome
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Post by liane on Jun 2, 2015 11:16:11 GMT -5
rsr,
Great post, and good to know the designer of Dreamboat was able to provide advice. I'm surprised your friend was having trouble. At the ASM, I was able to see the BluHale device in action. This simulates the inhalation on a Dreamboat. The Dreamboat is powered on normal inhalation; and all the powder is deposited in to the lungs in something like .5 seconds. Unlike certain other types of inhalers, Dreamboat does not require a deep inhalation or complicated timing. It works on the normal breath. Quite elegant really!
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Post by notamnkdmillionaire on Jun 2, 2015 11:23:40 GMT -5
I said long ago that I thought social media would be key to helping Afrezza get off the ground. Today, I think it is even more important due to, imo, the abysmal roll out of the drug. Many of the first users realize how Afrezza has liberated them to live their lives. If they want to continue to have access to Afrezza, they will need to anoint themselves as Afrezza Evangelists to get the word out to others to try it. They have a lot to loose if SNY can't create any momentum for Afrezza.
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Post by rockstarrick on Jun 2, 2015 11:41:11 GMT -5
rsr, Great post, and good to know the designer of Dreamboat was able to provide advice. I'm surprised your friend was having trouble. At the ASM, I was able to see the BluHale device in action. This simulates the inhalation on a Dreamboat. The Dreamboat is powered on normal inhalation; and all the powder is deposited in to the lungs in something like .5 seconds. Unlike certain other types of inhalers, Dreamboat does not require a deep inhalation or complicated timing. It works on the normal breath. Quite elegant really! That's what I told Ray when he first started having this problem. I told him this wasn't anything he would need to overthink, just use the inhaler for 15 days and toss it. He must have been a little hesitant at first to inhale product into his lungs. The gentleman who I spoke with yesterday,(Dreamboat Designer) did say he would need to use a little more force for the 8 unit cartridge, it did make sense, especially if Ray wasn't inhaling correct in the first place. There is a learning curve when switching from an injectable that you have used for decades, to an inhaled insulin, and unfortunately there isn't a lot of resources out there for problem solving at this early stage. Ray was extremely thankful for the help I was able to round up, especially getting linked up with Sam Finta. I'll keep updating this probably once a week to let everybody know how Ray is doing. I think the issue is fixed. Thanks Again. |
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Post by esstan2001 on Jun 2, 2015 11:43:31 GMT -5
I said long ago that I thought social media would be key to helping Afrezza get off the ground. Today, I think it is even more important due to, imo, the abysmal roll out of the drug. Many of the first users realize how Afrezza has liberated them to live their lives. If they want to continue to have access to Afrezza, they will need to anoint themselves as Afrezza Evangelists to get the word out to others to try it. They have a lot to loose if SNY can't create any momentum for Afrezza. What is still amazing to me is the (near infinite) ratio of Afrezza social media success stories to those that did not like it (I can only recall maybe 3 or 4 that decided not to continue for some moderate complication) No, I think SNY waiting for Insurance to drop a tier coupled with the FD-AOK to advertise at the 6+ month mark (and just after ADA)- this is the event that alters the script trajectory (albeit plus 6-8 weeks for the script process to run it's course). I'm in the camp that the 'abysmal roll-out' was the plan. They likely needed to observe adoption and adapt their marketing and selling to it. |
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Post by rockstarrick on Jun 2, 2015 11:50:16 GMT -5
I said long ago that I thought social media would be key to helping Afrezza get off the ground. Today, I think it is even more important due to, imo, the abysmal roll out of the drug. Many of the first users realize how Afrezza has liberated them to live their lives. If they want to continue to have access to Afrezza, they will need to anoint themselves as Afrezza Evangelists to get the word out to others to try it. They have a lot to loose if SNY can't create any momentum for Afrezza. Definitely true, the Dr that prescribed Afrezza knew very little, and was in no way helpful in solving this. This problem was identified and solved by a joint social media response followed by a very quick response from Mannkind. I originally called Matt, he forwarded the matter to the Gentleman I spoke to yesterday. I can't remember his name, I do have a screenshot of the call from Danbury Conneticut from yesterday. Regardless, any inhaler problems must go through the Sanofi 800 #, and will eventually end up in Danbury on his desk. I was very impressed with the very quick response from Mannkind, and how helpful and concerned he was. |
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