AfrezzaUser

Advocate for Afrezza

The Inside Truth about Exubera and Afrezza from Actual Users of Both!

For years, I’ve been saying the only thing in common between Exubera and Afrezza is that they were both inhaled. I recently decided to talk to the real experts about this issue-two people that have been on both insulins! They happen to also be in our Afrezza User “Real-Life” Results Group  and have firsthand experience with Exubera (which has been a perennial comparison for Afrezza), so I wanted to take the time to ask them some tough questions (separately) that I’m sure we would all like to know. What they said was more than I have ever learned from any other article. 

The two individuals are (Laureen) =Laureen (T1D since 1983) and (Brian)=Brian (T1D since 1999) and they had a lot to say about their experience and opinion of Exubera and Afrezza. This is where our interview begins.

Background Info: What was the deciding factor for you to begin Exubera, and how long were you on it for? Was it an easy transition for you?

(Laureen) For me the deciding factor was reducing injections and gaining better control. In my lifetime, I have done over 100,000 injections, so having another way to administer a drug I needed to live was fantastic. The first 4-6 weeks took adjusting. Mainly because Exubera was dosed in mg and no doctor ever dosed insulin that way. Exubera also made my long acting (Levemir) more effective, so I had to reduce my basal level. I was on Exubera for 2 years.

(Brian) I started taking Exubera because I hate to take shots. I took Exubera from its launch until about 2 1/2 years after it was discontinued. It was a very easy transition from injectable insulin. Inhaling insulin is WAY easier and WAY more convenient than injecting insulin.

What was your experience with Exubera: the 3 best things and the  3 worst things?  

(Laureen)  Best

  • Ability to take insulin anywhere without the stares of needle phobs
  • Amazing control it gave me and reduction to one injection a day of Levemir
  • Lower HgA1c

Worst

  • Size of inhaler – I had to buy a larger purse to carry around, a small price to pay, but it was gigantic
  • Determining dosage in mg
  • Adjusting back to Novolog once it was pulled off the market and my supply ran out

(Brian)  Best

  • No shots for fast acting insulin.
  • Super easy and convenient to use. could throw in car and go, take doses while driving.
  •  Can easily take multiple doses of insulin to adjust and correct, instead of a giant single dose like with injectable insulin.

Worst

  • The inhaler was very large.
  • People would think it was a Bong. Still was quick to use, so could do it more discreetly than a shot.
  • The properties of the insulin was lacking.

How did you feel when Exubera was pulled from the market, what did you do?

(Laureen)  I cried; I was absolutely devastated. I could not believe a drug company as large as Pfizer only gave this new drug a matter of months to take off. How could you expect to see sales with no advertising and when doctors didn’t even know about it. Exubera was my cure. As a type 1 diabetic, I don’t anticipate seeing an effective artificial pancreas or non invasive way to provide me with the insulin I need just to stay alive. Exubera gave me the freedom to feel like a normal person and inhale when I needed to without another injection. Injections keep my alive, but a world without them is one I didn’t think I would ever see, until Exubera.

(Brian)  I felt completely outraged, it was not given a chance or enough time to succeed. It would have helped a lot of people with their control of diabetes. My wife called Exubera and complained. During their last week of business a 2 1/2 year supply showed up on my front porch.

What was the deciding factor to try Afrezza? How was your transition?

(Laureen)  I have been following Mannkind and Afrezza (formerly Afresa) since 2009, when Exubera was pulled off the market. I emailed Matt Pfeffer, from Mannkind, to get information on trials and FDA approval. In 2009-2010, Afrezza was in very early stages so I continued to follow it through the trials and FDA denial, then subsequent approval. I took trial information to my physician and as soon as it hit the market, I said, I want it.  As with any change in medicine, there is a transition period, but so far it has been good. Determining proper dosing on Levemir and carb to Afrezza ratio has been the biggest challenge; but, I have found transitioning to Afrezza has been painless. The biggest issue so far is getting enough supply as to not run out.

 (Brian)  While using my 2.5 year supply of Exubera, I heard about Afrezza. I hoped my Exubera would last until Afrezza launched. Of course that didn’t happen, but it did allow me to follow Afrezza and be prepared for its launch. The transition this time was remarkable. In just 2 or 3 days I could see that I was going to have great control. I couldn’t believe how well it worked. I just wanted to not take shots. I knew from Exubera inhaling insulin is easier, I knew I would have better control but I had no idea my control was going to become ground breaking.   

What has been your experience with Afrezza so far?

(Laureen)     Best

  • Afrezza works instantly. I have checked my blood sugar every 10 minutes after inhaling and eating to show no, I mean NO spike in BS, at all.
  • The life of it – since it is in and out in 1.5-2 hours, it makes life so easy. I don’t have to worry about if I still have Afrezza left from a previous dose (like I did on Novolog). I can eat a snack, like a normal person, and inhale Afrezza with no worries about a tail end overlapping and bottoming my BS out.
  • The Dreamboat – it is an amazing device. I am a woman, and we have very small pockets in our pants, but Afrezza slides right in!

Worst

  • Insurance coverage – This drug is FDA approved and the pre-authorizations and not getting comparable coverage to a bottle on insulin is an absolute crime.
  • Did I mention insurance coverage?
  • Medical professional’s lack of any actual data on this medicine. I have “argued” with Pharmacists and Doctors about the misperceptions they have on it because they are not educated. I get very frustrated when people say bad things about it with no solid data to go on.

(Brian)     Best

  • The insulin itself works remarkably well. It has the ability to stop BG from rising. I can eat anything I want and it just wont allow my BG to rise, or rise very little. On the other hand if I do have a BG reading higher than I like it lowers my BG very gently. It took me while to figure that one out. People say 4 units is too much if your at 130, but that’s not true. Afrezza works so fast and stops working so fast 4 units just gets your BG moving down, by the time your at 100 its all done working.
  • Super easy and convenient to use. I can use it any time, anywhere. I can take a dose while driving alone down a winding road in the dark. Its too easy, and the inhaler is super small. I do it right in front of people all the time and they don’t think anything of it. It attracts 0 attention.
  • Taking multiple doses is huge. With shots you have to guess how much your going to eat, how much you plan on exercising, your current BG and if its rising or falling, then take your best guess at how much to shoot up. With Afrezza because your inhaling it, you can take a smaller dose, then take more later, as often as necessary. All the people I know who take injections try to do it in one dose, and if they didn’t guess their dose just right they tend to wait until their next shot. This makes them high for a long time. The body does not digest all Carbs at the same rate, so taking multiple doses makes more sense to coincide with digestion.

Worst

  • The only bad thing I’ve experienced is that for some reason there are folks out there determined to bash it. It doesn’t matter what evidence I provide, they have made up their minds to be against it. It’s a new drug, people are just starting to use it. How can you be against something that hasn’t had a chance to prove itself. It’s like they are walking up to a person who is 6’6 and saying they don’t think they can play basketball, without ever seeing them play…In my opinion its like they’re saying it to Michael Jordan!

How do you think Exubera and Afrezza stack up against one another—are they comparable and is it a fair comparison?

(Laureen)   This is difficult as they are different drugs. In general they appear to be comparable, but the advantage of Afrezza is the “quickness” of it. It is in so quickly and out quickly after covering food and never increasing BS. Exubera stayed in a bit longer and I would have to think more about if I had a tail left before inhaling more. The other glaring piece to me is the powder in Afrezza is much more effective. With Exubera, I took 7mg at a time. The mg comparison to what I take with Afrezza is 1.4mg (for 2, 8 u cartridges). So you need a lot less powder than with Exubera.

(Brian)   It’s not a fair comparison, they are similar in how easy they are to use and the fact that you can take multiple doses. I don’t get real bent out of shape when they are compared because Exubera would have helped people. The decision to pull it off the market was the cause of its failure, otherwise it could have been successful. On the other hand Afrezza would have caused its demise due to the fact that Afrezza works so much better.

What would you say to someone who was on exubera and now thinking about taking Afrezza?

(Laureen)   Do it. Don’t ask your doctor, demand a sample to try it. It will change your life. If your doctor says no, find a new doctor. We must be in charge of our own health and if a doctor refuses to look at the data and see how this is changing lives, then a new doctor is in order.

(Brian) Do it!  

 How long have you been on Afrezza and what is your opinion-has your life changed at all—can you give a few examples?

(Laureen)    I am going on 4 weeks. I had a sample pack then ran out and had to go back to Novolog for a week before I could get re-supplied. The instant effect of Afrezza on food intake is amazing and honestly unbelievable. If I didn’t check my BS so often to prove it, I wouldn’t believe it myself. I was 93 at dinner, ate pasta and had a glass of wine, inhaled 2, 8u cartridges, and one hour later, 90, 2 hours later, 105. There is no spike in bs. I am a normal person!

(Brian)   I started Afrezza about at its launch, within a few days. Has my life changed? Ya, bigtime. My pre Afrezza A1c was 10.1. My first A1c on Afrezza only I expect to be around 5.5. I’m no longer sick from Diabetes. With Afrezza I don’t ever have high BG anymore and I don’t have lows either. I don’t consider myself a diabetic anymore. Not health wise anyways.

What do you think is keeping most doctors from prescribing Afrezza? How encouraging and knowledgeable was your doctor to prescribe it?

(Laureen)    Doctors are confused about the dosing as well as prescribing info. I went to my doctor with the information and told her I wanted it, but she wasn’t sure how much I should use and was confused about only 2 options for dosing. Now, those 2 options work very well, but there needs to be better education on the pharmacology to physicians and pharmacists. I had been bringing my doctor information on it for 2 years. She was knowledgeable about it, but leery of the dosing.

(Brian)   My Dr. knew about it because I called her the first day I heard about it a few years ago and I have been waiting ever since. I forced the conversation. I spearheaded the Dr. to learn about it. I was crushed a couple weeks ago when my cousin who is a T1 came back from her Endo appointment and told me her Dr. wouldn’t prescribe it to her. Her Dr. told her it’s only for T2’s and that I must be a T2 or else I was misdiagnosed. I would laugh at that, except for that Dr. compromised my cousins health and made statements that are way out there. I’ve been a T1 for 16 years by the way. I think there is a total meltdown in regards to Dr.s and their current knowledge and understanding of Afrezza. This is a area that needs to be addressed and fixed .

Having taken both, what would you tell everyone? What are you going to tell your doctor when you see him next? and what is your recommendation about Afrezza-do you think it will be a success or go the way of Exubera?

(Laureen)    Afrezza is as close to a cure for Type 1 diabetics as we will ever get. I get there are insulin pumps, but I refuse to walk around with a tube attached to my body all day. If you are type 2, and didn’t want to take injections, then you will love this. This drug is amazing, it gives you freedom and peace of mind. My doctor will hear all about my great blood sugars. I will also tell her to give my contact information out to others who want a firsthand account of it. Exubera being pulled devastated me, so I only hope that health care professionals, Insurance Companies and Physicians open their mind to a non-injectable form of insulin. Once they see the real life results, they will see there is more than one way to manage this disease, a much less invasive way.

(Brian)     I’d tell any diabetic to consider it or better yet, try it. It doesn’t work like any other insulin, so it really can’t be compared to other insulins. If diabetics try it I am convinced they will have results just like mine.When I see my Dr. next time I’m not going to say anything. She will read my graphs from my CGM. They speak for themselves. So will my A1C.  I think Afrezza will be a success. With Exubera we didn’t have CGM,s to prove the results, it didn’t work even close to how well Afrezza works, and there was no social networks to share the data. Nowadays I can post my results online in a minute. Others can see the results nearly real-time. I have a lot of people interested in it. I know the demand is there. The two biggest hurdles Afrezza faces is lack of Dr’s who are knowledgeable, and lack of insurance that covers it appropriately. Right now the only people using Afrezza are the ones who demanded it and went through all the work to get it. It shouldn’t be that hard to get. My Dr. was totally onboard with it and my Insurance also covered it prior to launch, and yet it still took many phone calls from me to my Dr. to my Insurance and to my Pharmacy to get the Rx written by Dr. just right so the insurance company could cover it and the Pharmacy could order it. This is a issue that needs to be fixed.

Anything you want to say/add not asked or covered?

(Laureen)    Fight for what you want and for what works for you. Write to medical directors and go through appeals processes because this drug is worth the fight. This is your life, your body and you have to live with any complications so do not let anyone tell you this drug doesn’t work. It does, I can prove it.

(Brian)    When you have control of your diabetes, your life does change. Your health gets better immediately. Afrezza will give Diabetics total control of their BG.

 

Thank you so much Laureen and Brian for sharing your experiences and opinions with me and also the world. Grateful for all you are doing for diabetics everywhere and also taking control and going on the “offensive” against your diabetes to have a longer and healthier life with your family and friends. Wishing you both an easier journey now that you have Afrezza.

 

 

10 Comments

  • Reply johnhindepost |

    Sam, congrats on a very well constructed blog containing a very relevant Q&A with Afrezza users Laureen and Brian. I would like to thank Laureen and Brian for sharing their experiences on both Exubera and Afrezza.

  • Reply sonny |

    excellent information…I hope Drs., insurance companies and Pharmacies get on board with Afrezza fast for the sake of all the patients that can be helped by it. Keep up the good work.

  • Reply Kelly |

    Amazing stories. Thank you so much for sharing them. I’ve enjoyed watching all three of you Tweet about your improved your health and well being. Here’s to many more years of health and happiness!

  • Reply C Evans |

    Thanks to both participants. Agreed, fight for what you believe, it’s your body and your health at stake. A revolutionary medication like this is something that can and will save lives. For once many will be nearly (Living without diabetes.) Congratulations to all the early adopters having the courage to lead the way!

  • Reply Rich |

    Great Q&A! I pray Afrezza never gets pulled from the market and one day diabetics worldwide will have this life changing drug available to them. Keep up the good fight and god bless !

  • Reply Debby |

    Keep up spreading this great information everywhere we can so more diabetics can be helped, insurance companies pay, and Afrezza can stay on the market. Frustrating how doctors won’t listen, even to data. I will be trying to get my daughter an appointment with a new doctor Monday, no matter how long the wait while she studies for her last college finals before graduation. Want Afrezza to be her graduation present as she goes out into the world.
    I have a friend of my hair dresser who has been marketing Afrezza for Mannkind. I am trying to speak to him to discuss how best to reach doctors, if those of you who have been posting numbers have suggestions. I know my daughter’s doctor’s office was misinformed and confused.
    I will also be speaking to Miami’s UHealth System Endo Dept to try to get them on board.

Post a comment