AfrezzaUser

Advocate for Afrezza

It’s been 3 years, what ever happened to all those original Afrezza Users?

Well, I’ve been asked that a lot lately so I thought I’d sit down and let everyone know what life on Afrezza has been like for us a few years down the road now.  *Spoiler alert*  – if you don’t wish to read all the updates you can skip to the summary at the end.

With my niece and nephew on my last trip to Europe

 

If you have read all my articles, you know that I was in one of the original Afrezza drug trials and wrote about my experience before the FDA approval (as well as testified in front of the FDA recommending approval) to help others, save lives and overcome the ups and downs of diabetes management.

 

Once Afrezza was approved in 2015 I wrote extensively about my experience, and also invited a few new friends who wanted to see if they could get the same results that I did (my A1C went from over 10 to 6.5 now and my time in range has never been better). Those diabetic acquaintances have become lifelong brothers and sisters as we have a new hope for the future and for all those that will come after us. After a year or so of extensive blogging, and doing my very best to spread the word about the miracle drug developed by Al Mann (Founder of MannKind Corporation), my life got busy again—my businesses have expanded and my personal travel has been the best of my life. Certainly, I attribute that personal and professional success to Afrezza!

 

One slogan that I thought about for Afrezza was “Now I can Live normal again” because one theme that seems to weave through all of our lives is that we are all living like we did before we all got that never imagined visit to the emergency room and the diagnosis of Diabetes. Isn’t that only supposed to happen to other people? Well, I’m proof it can happen to anyone and at anytime. And it is happening across America and the World. The difference is Afrezza gives us our life back! Here are some thoughts from our group and how everyone is doing:

 

 

From Eric Fenar:

Eric with his daughter Kayla and Al Mann in Danbury, CT along with his previous record low A1C printout from his doctor

 

I feel sooooo much better…..Better blood sugars with less effort, yes I typed that correct way better blood sugars with LESS effort. I am not connected to a pump and after wearing that device for 20+ years I hated that thing. Not to mention the slow insulin inside that pump.

 

His A1C: Well IM NOT A FAN OF A1C’S. Heres why– in college I once had an A1c of 6.5, which is pretty damn good except for the fact that my blood sugar was never 154. I was 360 then 40 then 280 then 75. That A1c was very very misleading. I’m a much bigger fan of “time in range” according to my dexcom. Since my dexcom CGM is connected to me 100% of the time I like these numbers better. My 90 day average according to dexcom is 131 which equated to an a1c 5.8-5.9 with 90% less lows, Let me state that again 90% LESS LOWS….

 

What effects has Afrezza had: Low blood sugars put stress on the people around you….I stated above that with afrezza I have about 90% less lows…So my family has less to deal with…..When my blood sugar is high I would be very unpleasant making it difficult for my loves ones to deal with me. My relationship with my doctor hasn’t changed but I’m saving my health insurance company a ton of money in healthcare expenses now and even more potentially in the future.

 

His best advice: Start yesterday. Don’t let your doctor/your insurance company/anyone tell you NO for afrezza. Once you get afrezza reach out to someone that’s on it and get “dialed in” Afrezza is a PARADIGM SHIFT and you as a diabetic need to talk to someone who is using afrezza day in and day out!

 

His experience now: Way better blood sugars, not being connected to a pump, less lows. Less diabetic baggage meaning when I had a pump I had to almost always carry my extra supplies around with me. With afrezza you don’t need to carry all those extra supplies.

 

Wants to thank: I think Mike Castagna (Mannkind CEO) is doing an amazing job leading Afrezza into the future. Every Mannkind sales rep that I have met has such a strong passion for Afrezza. I really wish Al Mann was still around to witness the amazing appreciation and thanks from all the newest Afrezzausers I meet and to also thank him again and again for his passion, tenacity and vision for not giving up. He spent nearly a billion dollars (of his own money) and gave years of his life in exchange for helping to benefit diabetics. Al Mann is still my hero and I think about him daily. Thank you to Al who saw the advantage and what was possible before anyone else did and then made it happen. #inalmannitrust

 

From Jackie:

       Did you know Jackie was once even featured in an Afrezza Ad? (Should MannKind use ONLY real Afrezza users in their ads–what do you think?)

Hey Sam! Everything is going great.

 

With Afrezza, I use my Dexcom CGM and Tresiba basal insulin and feel like there is no better combination of monitoring and insulin to help a diabetic maintain a normal lifestyle and achieve non-diabetic glucose levels.

 

My endocrinologist is well aware of my passion for Afrezza and I have a great bond with the PA at my doctors office and it helps to know that she is on board with Afrezza and is just as happy as me to see my super improved A1c levels (prior to Afrezza, I had A1c’s in the 9s).

 

My daughter stayed home for her first year of college because she was genuinely worried about leaving me alone since I had so many low blood sugar calls. Thanks to Afrezza all that has changed.  I cannot recall the last time I have had a low BS episode and I have had many scary stories “pre-Afrezza”.   One ‘pre-Afrezza’ story to note is the impact retinopathy had on my eyes.   Pre-afrezza I was having laser surgery on my eyes at least once a year.  After Afrezza, my retina doc was shocked in the improvement of my eyes – my visits went from every 6 months (and generally ended up with laser surgery) to 1x a year, just to monitor – and all has been good. My daughter is now away at college and doing fine — and she doesn’t have to worry about me!

 

Not to sound cliche but Afrezza really is a game changer.  It is worth whatever fight you have to make with your doctor or insurance company to get it.   It’s important to learn what your basal insulin should be, and Afrezza is a breeze after that.  Follow your blood sugar and don’t be afraid to correct.  You can maintain your blood sugars in a normal, non diabetic range – without effort – once you have dialed your dosages in with Afrezza.

 

I am very thankful and grateful to Mannkind and especially Mike Castagna everyday for putting Afrezza out there and sticking by a product that has so much potential to improve so many lives.   Day in and day out, they all work hard and make the right decisions to ensure Afrezza is an available and viable treatment for diabetics like me.  I had all but given up before Afrezza, but being able to control my diabetes has really changed my outlook on things.

 

I look forward to living every day to the fullest. I strive for my 100% “in-range” days – which are possible when you use Afrezza. It’s a huge accomplishment that many non-diabetics couldn’t possibly understand. But we do, don’t we Sam! Thanks and much love to all the great MannKind folks who made it a reality! It has been a life-changer!

 

 

From Laureen:

Laureen is enjoying life!

Hi Sam,

Life is easy now. My A1C is 6.3! Afrezza has given me so much more freedom. The biggest change is that I have much less worry about low blood sugar or a long tail. I can eat like a normal person without worrying about how long the insulin will be in my body.

This makes lifeway less complicated. For me, it’s easy to take my inhaler anywhere without the anxiety or worry of injecting.

 

The advice I would have for people considering Afrezza is to   FIGHT FOR IT! There is no other insulin that works this quickly without a tail. Even if you eat sporadically, Afrezza can handle it. No matter how late I eat dinner, I never have to worry about bedtime lows because Afrezza is out of my system so quickly.

 

Some of the best things I’ve experienced because of Afrezza is simple—less worry, better sleep and less need for sugar in order to bring up lows. If my blood sugar is low now it is human error in what I dosed not because a tail comes and bites me later.

 

One thing I would like to say to MannKind is THANK YOU for keeping up the fight and please continue to do so. We must get insurance to ease their prior authorization requirements so more people can use this miracle medicine!

 

From Howard the “Afrezzaguy”:

Howard the “Afrezzaguy” in action!

OK, your A1C:

 

Life is good when you not only feel healthy but you are healthy! My last two A1c s are 5.3 and 5.7. I have not had an A1c over 6.0 in almost two years! After starting Afrezza my A1c declined from the mid to upper 8’s and after nine months of being on it they have been in the 5’s ever since. I have another A1c coming up and my Dexcom is predicting between a 5.3 and 5.5! Average BS over last three months is a 106.

How he feels now:    

 

Since being on Afrezza I feel like a NON-DIABETIC. I say on my Twitter account “LIVE NORMAL” and that is exactly what Afrezza has allowed me to do. Afrezza has made me healthier by—bringing my sugars into ranges enjoyed by non-diabetics, having healthy eyes and feet, being taken off high blood pressure medication, only going to Endo twice a year, being able to work out without experiencing crazy lows, and zero diabetic complications.

 

How are you relationships now with friends, family and doctor:

 

My family and friends are of course amazed at how well Afrezza has worked for me in controlling my diabetes. They see I am less stressed and healthier—“LIVING NORMAL”. There is much less concern of a having me experience a severe hypo or other diabetic complication. Eating and drinking are not a major concern any longer. They see I no longer have to babysit my disease on an hourly basis and can just relax and ENJOY! My doctor is just amazed at how well I can now control my Type 1 and marvels at my DEXCOM graphs—the lack of spikes and hypos. My doctor cut my office visits down to only two a year instead of four due to my control.

 

Advice for people starting Afrezza:  

 

My advice for people starting Afrezza is first get your basal insulin dialed in especially if changing over to a new drug. Next is do not compare Afrezza with your old liquid insulin—they are not the same! Not even close. Two totally different drugs. Afrezza is not a one to one relationship or the same units, and it’s very fast acting so you don’t have to take it way early before your meal. Start with a smaller dose and work your way up until you feel comfortable with your ratios. Afrezza also leaves your system within a couple of hours so a follow up dose might be required. Give yourself time to learn Afrezza and how it works in your body—it is not an overnight thing. It took me about six months of experience on Afrezza to change my mindset from my old habits and realize this is a total shift of diabetes therapy. Now Afrezza has become second nature and the control is fantastic. Do not get frustrated and think Afrezza does not work because it truly does and then some. Ask other experienced Afrezza users for advice and any concerns. Afrezza for me was nowhere near as frustrating as the pump or injections. There are still some days diabetes just wants to do what it wants but those are now very few and far between. Take the time and learn your new therapy. You can do it!

 

Best thing he has experienced:      

I started Afrezza on April 2, 2015. When I started I was on an insulin pump due to injections not controlling my sugars at all. Crazy spikes and severe lows were a weekly occurrence. After being on Afrezza for a few months I ditched my pump and have been pump free for over two years. Being rid of the insulin pump for me is a POSITIVE life changer. Not only did Afrezza allow me to become pump and shot free, it controlled my sugars better than ever. My A1c has dropped into the fives and I have zero side effects. The best part for me about Afrezza other than being pump free is the piece of mind of keeping my sugars within range with little effort. Knowing Afrezza will work fast and not linger around to hypo me is number ONE for me.

 

Message for MannKind:

 

To Mannkind Corporation and my insurance company, Cigna I cannot thank you enough for Afrezza—it has truly given me my life back as Type 1 Diabetic and I am 100 percent convinced it has added healthy years to my life.

AWESOME CONTROL = NON-DIABETIC NUMBERS = HEALTHY = LIVING NORMAL!

 

From Hillard Saveth (Type 2):

 

                        Hillard says “Don’t hesitate to call your Doc and demand Afrezza”

OK, your A1C:

My last A1C was 5.2

How he feels now:    

I was lucky when I self diagnosed myself back in Feb 2015. The only problem that I felt was directly related to my T2 was my Neuropathy in my feet. Back in Nov 2016 I met several Endos and was told they think my Neuropathy was caused by my lower back problems. I recently had a Lumbar Laminectomy and although my lower back is free from pain the Neuropathy is still with me as I was told it would take time for that pain to dissipate.

How are you relationships now with friends, family and doctor:

My current Dr (Endo) was against me taking Afrezza. I had to fight and prove to him how great Afrezza was before he would write my letter of medical necessity. My T2 D is a non issue for my friends and family because it’s a non-issue for me. I have it well under control.

Advice for people starting Afrezza:  

Try it and stick with it until you learn how it works best for you. Don’t worry about dosing too much. You will love it!

Best thing he has experienced:      

Eating what ever and when ever I want and knowing my BG will be under control. Also that my T1 son who has been using Afrezza for 30 months is doing great and has his T1 under control with only one shot a day. HIS LIFE HAS REALLY CHANGED. :).

Message for MannKind

Thank you for sticking out the hard times and keeping Afrezza on the market.

From Gustavo Basualdo:

Gustavo is MannKind’s first and most famous triathlete

 

OK, your A1C:

Freaking awesome, enjoying non-diabetic numbers with 1/10 of the effort than with injected. Since I started with Afrezza on May 2015, my average A1C is 5.6, and time in range 60-140 around 85%. And eating what/when I want. It’s just insane to think the effort having that control would take with injected.

How he feels now:    

 See above. The difference is I think very little about T1D. It’s a wonderful feeling.

How are you relationships now with friends, family and doctor:

 See my blog about the Afrezza thank you letter below. It changed our life tremendously as my family and me aren’t slaves of t1d anymore.

Advice for people starting Afrezza:  

Try it out! Stick to it, start small and explore, and ask other users. At least for me, I couldn’t possibly realize how much diabetes was ruling my life, until I started experimenting with Afrezza. And it’s a learning process.

Best thing he has experienced:      

The little effort compared to injected that you need to get good results.

Message for MannKind

THANKS, THANKS, THANKS!!

Please read Gustavo’s message here:

https://diatriguy.tumblr.com/post/138265041068/an-open-thank-you-letter-to-mannkind-and-the

 

From Brendan Hyland (in UK):  Sam, I have been using Afreeza full time since 23rd Dec 2017.  Within 2 months my HbA1c reduced from 6.5% to 5.9%.  Considering that the red blood corpuscles take 3 months to be replaced, this is an outstanding result in a short space of time.  I expect my next HbA1c in July 2018 to be between 5 and 5.5%. I have complete real time control of my blood glucose levels!

(Note: this is a remarkable change based on the last time I wrote about Brendan a few years go–which is appropriate because Brendan is a remarkable person.)

 

Afrezza – the Summary – 3 years later

Thank you to everyone who has touched our lives and learned about the miracle drug named Afrezza. All of us are doing very well, controlling our diabetes without any complications or chasing the rollercoaster of extreme highs and lows any longer. Afrezza has been a Godsend, courtesy of Al Mann and the MannKind Corporation.

I never thought in a million years that an unlikely person from humble means and a country far away (Hungary) could make such a difference in America and the World like this blog did. Originally, this project of mine was always meant to be an educational and informative place for a few other diabetics out there that I could help and I think that goal was accomplished. To date my website has been visited by people from 146 countries.

My journey before Afrezza was utterly agonizing and difficult at best. Other people I discovered, as you have read, have had similar hardships, and yet we all found each other through Al Mann’s vision, integrity and belief that any diabetic should be given the opportunity to live a normal life again. As you can see by our results, Al was right.

Interestingly, for anyone out there thinking it’s too late to accomplish something great in life, Al Mann didn’t purchase the company with the Technosphere molecule and Medtone inhaler until he was 75 years old, which marked the START of his scientific work on Afrezza in earnest. And if you want a lesson in hard work and perseverance, think about this–Al was 88 years old, and still working more than a full-time daily schedule before he would see Afrezza gain regulatory approval for type 1 and type 2 diabetes by the US FDA. Moreover he would also spend a $1 Billion dollars of his own money facing multiple disastrous failures (most beyond his control like the Martin Shkreli fiasco with the FDA in 2011) before crossing the finish line.

May it serve as an example to every MannKind Corp. executive/board member/employee to keep charging and never complain that their job is way too hard, or that they worked too long, or that they prefer to do it the easy way like everyone else (ie, advertising or sales- remember trusting Sanofi  with Afrezza future when they were a conflicted competitor selling competing products and no genuine interest)– because that route is mediocrity. And none of you in your career and financial position will ever sacrifice as much as Al gave (absolutely no disrespect intended to anyone, but it’s a fact).

Truly, due to years of efforts by Al and his team, our lives – all of us Afrezzausers and our families will never be the same. You did it. It works much better than anything else on the market, and we are all living proof.

Now, it’s up to all of us in the diabetic community reading this to spread the word, and share the incredible results we are all getting. Let’s not keep Afrezza as the world’s “best kept secret”. Like Eric Fenar always says, ”it’s not a cure, but it’s the next best thing!”. On behalf of everyone that gave freely of their time and shared their experience being in our group–Thank You! And to Mike Castagna and the current employees at MannKind, we are grateful to you every day for all of your service and commitment to keep providing a better, more normal life for all of us. Keep fighting, we are counting on you.

If you are new to Afrezza please start at the beginning of my blog and I hope and pray you’ll become the next Afrezzauser, and then go out and help others too.

 

Al Mann For Life Repays What you Put in

 

 

 

 

 

 

 

 

 

 

 

This blog is dedicated to the memory of Al Mann (and also to his wife Claude Mann) who I had the fortuitous pleasure of meeting in person. Thank you for never giving up Al. Neither will I. 

Al was always the smartest and hardest working person in any room. He never quit.

 

 

 

 

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