Don't know where to share experience

[hope4mannkind]

I am frustrated at the lack of acceptance to this drug. I will start by saying that my background is law enforcement and military. I am the husband and father of MODY diabetics. I married my wife in 2000 and have had to deal with this horrible disease since then. We have had numerous brushes with the hypos, first 2 I had to call 911, after that I started the IV dextrose bags on my own. First off I am always looking to make my wife's life more normal, she has been on numerous meds for her diabetes and although they all seem to work, they don't always work efficiently. All of the meds have at one time or another caused hypos. The hypos are what is the biggest concern for me, not only does it effect her cognitive skills it jacks with her circulatory system. I do not want her to lose any of her limbs (call me selfish). Anyway I came across an article a few years ago about Afrezza and started to research, which is what I am constantly doing to help her. I could not wait for her to get a chance to try it. She had to jump through major hoops to even get it. The PFT was the first hurdle although she passed it they still wouldn't prescribe so we fired her endo. These endos and docs think they are gods and can never be wrong (it's sickening). I got a little help from a couple of guys with screen names Harryx1 and rccrerra I think those where them. I got a list from one of them and found a prescribing Dr., it was a 2.5 hour drive but anything for my family. Dr. Honeycutt was the doc in Tn. Trying to make this short, my wife has never had more control of her diabetes as she does now. We all live a more normal life now, as long as she carries around that little inhaler and cartridges it's all great. I am dumbfounded when I read about people that are trying to take this away because of money. Shows the type of world we live in.

Here is something else that I have to share. The school called us a few months ago and told us that during a well check my son's blood sugar was 440. I was at work and we were down to one car. The kids clinic where he goes refused to see him, they said we had to take him to a emergency room in Nashville bout an hours drive for us. I made the decision to give him a 4unit cart of Afrezza because I could not leave work right away, my wife checked his sugar 30min later it was still at 280 something, she called me back and I said to give him an 8u, she did, after 45 min she checked again bs was 128. After we finally made it to Nashville they made us sit in childrens emergency room where they took his blood for tests and had him hooked to saline bag. Never got to see a peds Dr. just a nurse, I told her about the Afrezza and she was baffled. I can tell you that endos that I have dealt with are idiots, I don't know how they graduated from their studies. So they say he has to be type 1 because of his age, my wife and I tell them about her being a MODY, again with the confused looks, this is a pediatrician that we went to see the next day, she wouldn't listen to anything we said, so it was lantus and humolog. Had to chase him around the house to give him the shots and he is preteen. The lantus burns going in so that sucked, being a preteen his hormones are all over the place makes dosing the humolog difficult, he would go low and high, after going low and forcing him to eat a bunch of shit, I called the doc and told her this wasn't working and why not try less invasive than the most invasive, they refused to listen and told us to come back in for follow up, well after the wasted $6,000 in bills from the first 2 days, I am a little gun shy. My wife and I tried something on our own, she has lots of leftover metphormine so we monitored him closely day in and day out, after getting the dosage correct 750mg morning and 750 mg night he was averaging 120 bs, that's right we took him from a 14.4 a1c to a 7.7 in 2 months. I fired the high priced ped phys. found a smaller ped endo clinic and a doc who would listen (kind of) and he is now prescribed the slow releasing metphormine which is still avg about 150 as opposed to the 120 we had for him, we have him on a pretty strict low carb diet, every once in awhile he wants to be a kid so he has his own inhaler. I can not describe to you how fast this stuff is working in and out of their systems and how well it has worked for my family. I want people to know that you can fire these pompous asses if you feel that something is right for you, and you want to try it find someone who will do what's right for you. This is a miracle drug, the best thing out there until there is a cure. I would love to shake Al mann's hand but unfortunately I can't. I would also love to meet the people trying to take this away face to face. I know I left out some of our experiences but this has rambled on long enough. Please share my experiences with as many diabetics that you know, I cannot be the only person trying to do the right thing for their families.

[novafett]

I really want to read this but the wall of text is making me not want to. Any chance you can go back and just edit it with some paragraphs? Just a request i'm thinking others might share as well.

[hope4mannkind]

Any better?

[careful2invest]

Apr 20, 2017 12:45:59 GMT -5 novafett said:

I really want to read this but the wall of text is making me not want to. Any chance you can go back and just edit it with some paragraphs? Just a request i'm thinking others might share as well.

Granted, paragraphs would have been nice, but muscle through it, it's not so tough, the guy makes a few very good points.
Unfortunately, this is happening all over. And here we are at .20/share.

MNKD Needs to get their act together!
JDRF...Where are you??
Matt, Mike, the silence is killing the product (AFREZZA)

[peppy]

Apr 20, 2017 12:40:58 GMT -5 hope4mannkind said:

I am frustrated at the lack of acceptance to this drug. I will start by saying that my background is law enforcement and military. I am the husband and father of MODY diabetics. I married my wife in 2000 and have had to deal with this horrible disease since then. We have had numerous brushes with the hypos, first 2 I had to call 911, after that I started the IV dextrose bags on my own. First off I am always looking to make my wife's life more normal, she has been on numerous meds for her diabetes and although they all seem to work, they don't always work efficiently. All of the meds have at one time or another caused hypos. The hypos are what is the biggest concern for me, not only does it effect her cognitive skills it jacks with her circulatory system. I do not want her to lose any of her limbs (call me selfish). Anyway I came across an article a few years ago about Afrezza and started to research, which is what I am constantly doing to help her. I could not wait for her to get a chance to try it. She had to jump through major hoops to even get it. The PFT was the first hurdle although she passed it they still wouldn't prescribe so we fired her endo. These endos and docs think they are gods and can never be wrong (it's sickening). I got a little help from a couple of guys with screen names Harryx1 and rccrerra I think those where them. I got a list from one of them and found a prescribing Dr., it was a 2.5 hour drive but anything for my family. Dr. Honeycutt was the doc in Tn. Trying to make this short, my wife has never had more control of her diabetes as she does now. We all live a more normal life now, as long as she carries around that little inhaler and cartridges it's all great. I am dumbfounded when I read about people that are trying to take this away because of money. Shows the type of world we live in.

Here is something else that I have to share. The school called us a few months ago and told us that during a well check my son's blood sugar was 440. I was at work and we were down to one car. The kids clinic where he goes refused to see him, they said we had to take him to a emergency room in Nashville bout an hours drive for us. I made the decision to give him a 4unit cart of Afrezza because I could not leave work right away, my wife checked his sugar 30min later it was still at 280 something, she called me back and I said to give him an 8u, she did, after 45 min she checked again bs was 128. After we finally made it to Nashville they made us sit in childrens emergency room where they took his blood for tests and had him hooked to saline bag. Never got to see a peds Dr. just a nurse, I told her about the Afrezza and she was baffled. I can tell you that endos that I have dealt with are idiots, I don't know how they graduated from their studies. So they say he has to be type 1 because of his age, my wife and I tell them about her being a MODY, again with the confused looks, this is a pediatrician that we went to see the next day, she wouldn't listen to anything we said, so it was lantus and humolog. Had to chase him around the house to give him the shots and he is preteen. The lantus burns going in so that sucked, being a preteen his hormones are all over the place makes dosing the humolog difficult, he would go low and high, after going low and forcing him to eat a bunch of shit, I called the doc and told her this wasn't working and why not try less invasive than the most invasive, they refused to listen and told us to come back in for follow up, well after the wasted $6,000 in bills from the first 2 days, I am a little gun shy. My wife and I tried something on our own, she has lots of leftover metphormine so we monitored him closely day in and day out, after getting the dosage correct 750mg morning and 750 mg night he was averaging 120 bs, that's right we took him from a 14.4 a1c to a 7.7 in 2 months. I fired the high priced ped phys. found a smaller ped endo clinic and a doc who would listen (kind of) and he is now prescribed the slow releasing metphormine which is still avg about 150 as opposed to the 120 we had for him, we have him on a pretty strict low carb diet, every once in awhile he wants to be a kid so he has his own inhaler. I can not describe to you how fast this stuff is working in and out of their systems and how well it has worked for my family. I want people to know that you can fire these pompous asses if you feel that something is right for you, and you want to try it find someone who will do what's right for you. This is a miracle drug, the best thing out there until there is a cure. I would love to shake Al mann's hand but unfortunately I can't. I would also love to meet the people trying to take this away face to face. I know I left out some of our experiences but this has rambled on long enough. Please share my experiences with as many diabetics that you know, I cannot be the only person trying to do the right thing for their families.

oh jeese
Thank you for telling us.

[zuegirdor]

I'm pressed for time at the moment. I will try to get back to you to share my expereinces with my type 1 son. Meanwhile check out tudiabetes.org They have a blog on which you can post and read the helpful suggestions and experience of other s in the diabetes community.

[sweedee79]

hope4mannkind .. Thank you so much for sharing your story. I can relate to it as my dad was on Afrezza and even though the doses weren't prescribed exactly right and we didn't have a lot of support from docs..    his numbers were good .. but the most important thing that I saw was how he felt so much better on Afrezza and he lost so much weight. Even his blood pressure lowered in the short 6 months he was on the drug. Unfortunately he had to go off due to losing insurance coverage and he was tired of the hassle.

Afrezza is hands down an amazing insulin and better than anything on the market...   I share your frustration with doctors who don't want to listen..  and frankly I have no idea what we can do about it with the company in the position that it is in. It takes a lot of cash to market any drug.. plus I believe Afrezza is ahead of its time..   and then there are the politics in the medical profession to deal with as well..  and insurance companies who don't want to pay ..  It just seems we are up against a wall...

I pray for you and your family and everyone who needs Afrezza. that a miracle will happen.. 

[docfrezza]

This is all too common a story. I know Dr Honeycutt well. He knows what a great medication Afrezza is and what it has done for patients.

[compound26]

Apr 20, 2017 13:43:04 GMT -5 docfrezza said:

This is all too common a story. I know Dr Honeycutt well. He knows what a great medication Afrezza is and what it has done for patients.

docfrezza  nice to see you again! welcome back! Have you seen any Mannkind representative recently?

[docfrezza]

No representatives of any kind have called on me or anyone here for several months. The company is mute as best I can tell. I guess they are focusing on other territories.

[sluggobear]

I love reading stories like this and have always been a "true believer". But I'm sick that my $ loss in MNKD is nearly complete. I don't believe that any miracle can turn around the death spiral. At this point I'd be happy if they announced that they've given up and will now offer free Afrezza for anyone who has an Rx.

[boytroy88]

Apr 20, 2017 12:45:59 GMT -5 novafett said:

I really want to read this but the wall of text is making me not want to. Any chance you can go back and just edit it with some paragraphs? Just a request i'm thinking others might share as well.

It was a good read....it seems long but took just a couple of minutes..well worth the time.

[compound26]

Apr 20, 2017 13:54:47 GMT -5 docfrezza said:

No representatives of any kind have called on me or anyone here for several months. The company is mute as best I can tell. I guess they are focusing on other territories.

Surprise to hear that. Perhaps they think you are well informed on afrezza and therefore they'd better work on other less informed physicians first.

[peppy]

Apr 20, 2017 12:40:58 GMT -5 hope4mannkind said:

I am frustrated at the lack of acceptance to this drug. I will start by saying that my background is law enforcement and military. I am the husband and father of MODY diabetics. I married my wife in 2000 and have had to deal with this horrible disease since then. We have had numerous brushes with the hypos, first 2 I had to call 911, after that I started the IV dextrose bags on my own. First off I am always looking to make my wife's life more normal, she has been on numerous meds for her diabetes and although they all seem to work, they don't always work efficiently. All of the meds have at one time or another caused hypos. The hypos are what is the biggest concern for me, not only does it effect her cognitive skills it jacks with her circulatory system. I do not want her to lose any of her limbs (call me selfish). Anyway I came across an article a few years ago about Afrezza and started to research, which is what I am constantly doing to help her. I could not wait for her to get a chance to try it. She had to jump through major hoops to even get it. The PFT was the first hurdle although she passed it they still wouldn't prescribe so we fired her endo. These endos and docs think they are gods and can never be wrong (it's sickening). I got a little help from a couple of guys with screen names Harryx1 and rccrerra I think those where them. I got a list from one of them and found a prescribing Dr., it was a 2.5 hour drive but anything for my family. Dr. Honeycutt was the doc in Tn. Trying to make this short, my wife has never had more control of her diabetes as she does now. We all live a more normal life now, as long as she carries around that little inhaler and cartridges it's all great. I am dumbfounded when I read about people that are trying to take this away because of money. Shows the type of world we live in.

Here is something else that I have to share. The school called us a few months ago and told us that during a well check my son's blood sugar was 440. I was at work and we were down to one car. The kids clinic where he goes refused to see him, they said we had to take him to a emergency room in Nashville bout an hours drive for us. I made the decision to give him a 4unit cart of Afrezza because I could not leave work right away, my wife checked his sugar 30min later it was still at 280 something, she called me back and I said to give him an 8u, she did, after 45 min she checked again bs was 128. After we finally made it to Nashville they made us sit in childrens emergency room where they took his blood for tests and had him hooked to saline bag. Never got to see a peds Dr. just a nurse, I told her about the Afrezza and she was baffled. I can tell you that endos that I have dealt with are idiots, I don't know how they graduated from their studies. So they say he has to be type 1 because of his age, my wife and I tell them about her being a MODY, again with the confused looks, this is a pediatrician that we went to see the next day, she wouldn't listen to anything we said, so it was lantus and humolog. Had to chase him around the house to give him the shots and he is preteen. The lantus burns going in so that sucked, being a preteen his hormones are all over the place makes dosing the humolog difficult, he would go low and high, after going low and forcing him to eat a bunch of shit, I called the doc and told her this wasn't working and why not try less invasive than the most invasive, they refused to listen and told us to come back in for follow up, well after the wasted $6,000 in bills from the first 2 days, I am a little gun shy. My wife and I tried something on our own, she has lots of leftover metphormine so we monitored him closely day in and day out, after getting the dosage correct 750mg morning and 750 mg night he was averaging 120 bs, that's right we took him from a 14.4 a1c to a 7.7 in 2 months. I fired the high priced ped phys. found a smaller ped endo clinic and a doc who would listen (kind of) and he is now prescribed the slow releasing metphormine which is still avg about 150 as opposed to the 120 we had for him, we have him on a pretty strict low carb diet, every once in awhile he wants to be a kid so he has his own inhaler. I can not describe to you how fast this stuff is working in and out of their systems and how well it has worked for my family. I want people to know that you can fire these pompous asses if you feel that something is right for you, and you want to try it find someone who will do what's right for you. This is a miracle drug, the best thing out there until there is a cure. I would love to shake Al mann's hand but unfortunately I can't. I would also love to meet the people trying to take this away face to face. I know I left out some of our experiences but this has rambled on long enough. Please share my experiences with as many diabetics that you know, I cannot be the only person trying to do the right thing for their families.

Wife:

quote: my wife has never had more control of her diabetes as she does now. We all live a more normal life now, as long as she carries around that little inhaler and cartridges it's all great.

Quote: The PFT was the first hurdle although she passed it they still wouldn't prescribe so we fired her endo. These endos and docs think they are gods and can never be wrong (it's sickening).

----------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------

SON

Quote: So they say he has to be type 1 because of his age, my wife and I tell them about her being a MODY, again with the confused looks, this is a pediatrician that we went to see the next day, she wouldn't listen to anything we said, so it was lantus and humolog.

 Maturity-Onset Diabetes of the Young.

www.diabetes.org.uk/Diabetes-the-basics/Other-types-of-diabetes/MODY/

Quote: I called the doc and told her this wasn't working and why not try less invasive than the most invasive, they refused to listen and told us to come back in for follow up, well after the wasted $6,000 in bills from the first 2 days,

Quote: I fired the high priced ped phys. found a smaller ped endo clinic and a doc who would listen (kind of) and he is now prescribed the slow releasing metphormine which is still avg about 150 as opposed to the 120 we had for him, we have him on a pretty strict low carb diet, every once in awhile he wants to be a kid so he has his own inhaler.

Quote: I can not describe to you how fast this stuff is working in and out of their systems and how well it has worked for my family.

Quote: I want people to know that you can fire these pompous asses if you feel that something is right for you, and you want to try it find someone who will do what's right for you. This is a miracle drug, the best thing out there until there is a cure.

Reply: Medicine is not listening to the people that pay the medical  premium.

[nylefty]

Apr 20, 2017 12:40:58 GMT -5 hope4mannkind said:

 I fired the high priced ped phys. found a smaller ped endo clinic and a doc who would listen (kind of) and he is now prescribed the slow releasing metphormine which is still avg about 150 as opposed to the 120 we had for him,

You probably know this, but just in case: Afrezza isn't "approved" for kids (yet), but some docs are prescribing it for them "off label." Have you asked Dr. Honeycutt about this?