Interview with a Real, Live Exubera User (Under 50)

Meet Jennifer Haws.  She just started using EXUBERA, the first commercially available inhalable insulin from Pfizer.  She’s not a senior.  She’s not homebound.  And so far she likes it.  Which came as somewhat of a surprise to me personally, since I’ve been quoted as teasing about how impractical it seems.  Jennifer disagrees.

Jen Read on:

DM) Jen, can you tell us about yourself, and what led you to inhalable insulin?

JH) I live in Des Moines, Iowa, and work for a Credit Union as the Mortgage Loan Assistant. I am 29 years old and to give an actual diagnosis date is hard; when I was 12, they thought I might have type 2, ran some tests, put me on insulin for about a week and that’s all I can remember the doctor doing about it.

Then back in 1999, I had a miscarriage and during some tests after that, they said that I was type 2. They put me on pills, which did little for me, so I was quickly put on shots 4 times a day. Then I fell into the denial stage as many diabetics do, I was on and off with doctor visits and testing.  And then in 2004, my Mom passed away suddenly after suffering from diabetes and many complications from it. It took about a year, but I finally decided I needed to take control of my own care and went back to my PCP. She went through the diet education and carb counting and I started that along with Actoplusmet and Lantus at night. My numbers came down and we stayed with that, just waiting for inhalable insulin to come out on the market.

My doctor had done extensive research, and said I would be a perfect candidate for Exubera. We just had to wait for its release.

DM) Why exactly did your doctor feel Exubera was the right treatment for you?

JH) I believe it’s because in the past I have shown much insulin resistance so my dosages had to be rather high. I just know that she said I was perfect for it. All you have to do to qualify is take a breathing test to make sure you have the lung capacity before they can prescribe it, but that was a piece of cake! No pun intended.

DM) How long have you been using the inhalable?  And what has your experience been?  Was it difficult to learn/start?  

JH) I started on it September 25th, 2006, so it’s very new. So far, I absolutely love it, it is SOOOOO easy, painless and simple!

I watched the videos on the Exubera website before starting, so that I would be a step ahead.  They explain it all step by step. It was very easy to learn. According to my weight (265), I should take 2 of the 3mg blisters, which is the max dosage, but my doctor decided to weigh on the side of caution for the first month and I take one 1mg blister and one 3mg blister before each meal. I believe she chose correctly because my numbers are almost all within range. The dosing is based on the fact that you plan to eat about the same about of carbs at each meal. For me, I eat about 30 carbs at meals and then usually one snack before bed of 15 carbs.

DM) How many times a day do you dose in total? Is it comfortable to inhale?

JH) I take one 1mg blister and one 3mg blister before each meal. It is very easy and comfortable to inhale. There is no aftertaste, sore throat or any complications. Sometimes I find that with the 3mg blister, if I inhale too fast, the powder hits the back of my throat and tickles a little, causing the urge to cough, but that is easily fixed just by inhaling slower.

DM) What about the large size of the inhaler? Is that a problem for carrying or for using in public, like in a restaurant?Exubera_set

JH) Now according to popular belief, this thing is huge.  But in reality, it is not. People think “inhaler” and first thing they think of is something like an asthma inhaler. It is not that small either.

It is about 6 inches long when compacted, but about 10-11 inches fully extended (which is only done when dosing). It is about an inch and a half in diameter, so it fits nicely in a quart size plastic storage bag top to bottom then I roll the excess bag around it. That’s how I store it in my purse so that it keeps clean from anything in my purse.

As for using it in public, I am still getting used to that.  It’s new and a little unusual, but so far has not attracted any attention. Sometimes I will use it in the car before going into a restaurant, but only if I know that my meal will come quickly, since you can only dose max 10 minutes before eating.

DM) Can you share a story or two about your Exubera use?  Anything especially good, bad, or funny happen to you with it?

JH) I have not had any bad experiences with it, but my friends at work have been real comedians about it and refer to it as my “insulin bong.”

DM) Have you seen a positive effect on your glucose control (A1c or otherwise)?

Since I just started, I have not had an A1c yet since being on Exubera.  But my previous A1c was 13 and on Sept. 25, 2006 with diet and my oral med, it is currently at 8.1.  I believe that my next A1c will come down again to a very nice number, as my testing shows that my current BG levels are averaging about 100, and I no longer have the after-meal spikes that I was experiencing prior to Exubera. It is comforting to finally have such good control!

DM) Is it very expensive? Covered by your insurance?

As for cost, my insurance covers it at the highest co-pay level of $35, but that is much less than paying a co-pay for needles AND insulin. As for cost if it was not covered, the sticker price on the starter kit was $182.00, but it only ran me $35 as my co-pay. The starter kit included 90 3mg blisters, 180 1mg blisters, 2 replacement “filters” (to be changed every two weeks), one replacement chamber, and one complete unit consisting of the chamber, filter, and base. The base only needs replacing after a year of use. My replacement cost for the blisters and the necessary filters each month after will just be one copay of $35. So for about a dollar a day…. and NO SHOTS….YAHOOO!

DM) Would you recommend Exubera to others?

ABSOLUTELY. Wow, what an advancement in the treatment of diabetes! This would be so nice for all those people with needle phobia too! I am just so excited about it!

DM) So it sounds like you’ll happily continue using it, without any contingencies or issues?

I plan to keep using it as long as I can. The only concern I have is that my husband and I want to have children, and if and when the time comes that I become pregnant, I am not sure about use then.  But I’m sure hoping that I can continue then, too.

Thank you, Jen, for sharing your life and treatment with us.  **NOTE: Jen has promised to provide us an update here at DiabetesMine.com after she’s been using the inhalable for at least three months.  We’d all like to hear about the longer-term experience, I’m sure!

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16 Responses

  1. Zazzy
    Zazzy October 11, 2006 at 9:04 am | | Reply

    Thank you Amy and Jen! Very interesting to hear about someone actually using it. It sounds like the experience of using it isn’t as strange or awkward as I imagined it might be.

  2. Living With Diabetes
    Living With Diabetes October 11, 2006 at 9:19 am | | Reply

    Interesting – Exubera User

    Diabetes Mine: Interview with a Real, Live Exubera User (Under 50) She just started using EXUBERA, the first commercially available inhalable insulin from Pfizer. After reading the testimony, I still say “yech”. I also don’t think I’d do well since…

  3. Scott K. Johnson
    Scott K. Johnson October 11, 2006 at 9:41 am | | Reply

    I agree! Very interesting to hear about someone actually using it!

    Thanks Jen & Amy!

  4. Scott
    Scott October 11, 2006 at 9:43 am | | Reply

    The one noteworthy issue I think will ultimately prove to be Pfizer’s marketing mistake made with Exubera is the decision to abandon the widespread unit of measurement for insulin units in favor of milligrams. When I spoke to the Pfizer representative at the ADA Scientific Sessions in Washington, D.C. back in June, the woman (obviously a marketing person without much of a medical background) told me “we’re trying to change the paradigm of the way insulin is measured”. I told her that the core market for insulin remains the type 1 market because they have no treatment alternatives, unlike the type 2 market that has dozens of medicines and even a new class of drugs to treat their condition. I also told her that each mg was the equivalent to 3 units, which does not provide anywhere near the dosing precision as an insulin pump and that imprecision could cause many type 1s to have hypoglycemia because of dosing imprecision, she literally was unable to respond to me. However, its possible that when Novo Nordisk and Lilly introduce their versions of inhaled insulin, they will recognize this, which will mitigate any first-mover advantage Pfizer may have with Exubera. Pfizer deserves that; they spend more on marketing than they do on research, and Exubera is an example of what that leads to.

  5. Megan
    Megan October 11, 2006 at 9:42 pm | | Reply

    So you can’t carb count and dose based on that? Major downside for me.

    How many mg= how many units?

  6. flmgodog
    flmgodog October 12, 2006 at 10:11 am | | Reply

    Hey Jen,
    Interesting to hear about your inhaled insulin experience. Do you have a blog? I am interested to hear more.

  7. Jen
    Jen October 14, 2006 at 1:28 pm | | Reply

    No, you cannot carb base your dose, its based on weight and the idea of eating the same amount of carbs at each meal. My meals ususally run close to 30 carbs each. I am going to talk to my doctor about it on my next visit though and see about if I have a higher carb meal or have a high number about what can be done to combat that.

  8. Jen
    Jen October 14, 2006 at 1:29 pm | | Reply

    I do not have a blog, but feel free to contact me with any questions and I will try to help!

  9. Colorado Health Insurance Insider
    Colorado Health Insurance Insider October 17, 2006 at 12:29 pm | | Reply

    Wake Yourself Up With a Venti Grand Rounds

    Its a giant sized Grand Rounds over at Emergiblog today.  Kim, an emergency room nurse, has put together a Starbucks themed compilation of the weeks best healthcare blog posts.
    I found it very interesting that inhaled insulin is now available….

  10. Jen
    Jen October 17, 2006 at 4:39 pm | | Reply

    Visited with Doctor today and we are going to try using a sliding scale now on the dosage. So if my reading is over 200 and its not time for a dose, I can use 1mg blister to bring it down without eating.

  11. Franca
    Franca October 18, 2006 at 2:00 pm | | Reply

    I don’t know if you guys can help me but i thought i’d ask anyway… My mom lives in Argentina and is diabetic. Her doctor asked me if i could buy her some Exubera here (i guess the insulin she’s using now is not working very well) and bring it over there but i don’t think i can get it without a prescription from a US doctor.

    Is that correct? Does anyone have any ideas about what i could do? at this time it’s impossible for her to come over here and see a doctor to get it prescribed here. and i’m at a loss as to what to do next…

  12. Diabetes Forum
    Diabetes Forum November 7, 2006 at 11:43 am | | Reply

    Inhaled insulin

    Moose, I agree. Plus, I’ll add that there have been happy users. Amy at Diabetes Mine recently interviewed one….

  13. faith
    faith October 16, 2007 at 11:16 am | | Reply

    My company (Schlesinger associates) is performing a study on users and especially ex-users of exubers. If you have used exubera for atleast 1 month feel free to contact me toll free at 866-861-0395 ext. 212. we pay $60 for a 30 minute phone study.

  14. Giovanni
    Giovanni October 17, 2007 at 7:40 am | | Reply

    Hi all,
    I just started using Exubera, I have to tell you, it really does work, my bs numbers are improving drastically, and the device is very simple to use.
    Hey Jen,
    Care to comment on your progress so far?
    Giovanni

  15. Giovanni
    Giovanni October 18, 2007 at 9:28 am | | Reply

    Moot point, now that Pfizer will discontinue sales.

  16. Laureen
    Laureen October 25, 2007 at 8:25 pm | | Reply

    Pfizer pulling Exubera is a huge injustice to those of us who live it and eliminated injections! Unfortunately, Pfizer has a bunch of idiots working there who don’t know how to market a new product. Please send your Exubera stories to me. I’m launching a campaign to try to keep it on the market! Nektar needs a new partner!

    Fight4Exubera@aol.com

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