Followup with a Real, Live Exubera User

Editor’s Note: Oooh, this post is so TIMELY, in light of the fact that the LA Times ran a front-of-the-business-section story on widespread doubts about inhaled insulin this weekend.  Our gal feels differently. Read on.

Back in October, DiabetesMine.com spoke with Jennifer Haws of Des Moines, IA, pioneer in the use of new inhaled insulin from Pfizer.  I made her promise that she’d give us an update after three months, so we could discover if she remained as exuberant about Exubera as she was at the outset.  Well so far, so good. Jen now says “I still think that I am the only person in the world on it and it’s so great!” 

So here’s our latest little chat about inhaling vs. injecting and any concerns that might come with it:

DM) Jen, are you still feeling as positive about the Exubera inhaled insulin experience after three months of use?Jen_haws

JH) I sure am.  This has been such a great advancement in diabetes management. It is working great and I love it!

DM) What about results? How has Exubera affected your mean blood glucose readings and your A1c?

JH) My last A1c was in December and it went down to a 6.7!! Exubera controls the spikes. When I was on shots, I would roller coaster up and down and it would just make me feel horrible.  Since starting Exubera, I have not had one day that this has happened.  Of course I have had lows and some highs, but no I’m no longer and jumping all around with my numbers.

DM) Any lessons learned? Drawbacks? Or tips and tricks to share with other users?

JH) I have learned that the recommended two-week replacement of the cartridge inside (the filter-like thing) actually works better at a one-week replacement with cleaning. If not, at the end of the two weeks, it seems not to dose as well and gives me higher numbers. So far, no drawbacks. I did get a case for the unit which holds the inhaler and my tester, so that makes carrying very nice.

DM) And socially? Are you still comfortable carrying and using the relatively large Exubera inhaler device in public?

JH) Ah…it’s a breeze! I get it out in public, take my dose and am usually done before anyone even notices. If by chance they do, I am more than happy to tell them what it is! Most people figure it for something to do with asthma, so they don’t usually bat an eye.

DM) Any concerns about long-term lung damage? (What does your doctor say about this?)

JH) I don’t really have too much concern for this. My doctor had me do the regular breathing test required before prescribing. I know that all meds have some sort of side effect or drawback, but so far I have not noticed any change or difficulty. Being able to manage my diabetes so easily and limiting or removing THOSE complications weighs higher as a concern for me.

DM) Lots of people write to me looking for insights on whether they should try inhaled insulin. What would you say to these potential users?

JH) GO FOR IT! As someone who has been on pills, shots, restricted diets……and NOTHING worked for a long-term solution, I would say, TRY THIS!  Exubera makes a WORLD of difference. Diabetes is a demon that takes so much of your life to control, having something so simple is an absolute godsend. It makes me feel like I CAN BEAT THIS!

Thanks , Jen, for sharing your enthusiasm. I personally would like another reality check in three more months, because as I learned with my DexCom, there does seem to be sort of a honeymoon effect with new devices: you love them until they become as commonplace and annoying as the older stuff.  Let’s hope to ping Jen again down the road just to be sure  :)

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12 Responses

  1. Scott
    Scott January 22, 2007 at 8:21 am | | Reply

    I’m glad if she’s found it useful, but I don’t not convinced this is such a great advancement in diabetes management, and have no plans to try it myself.

  2. Bernard Farrell
    Bernard Farrell January 22, 2007 at 8:35 am | | Reply

    As an asthmatic (uh, person with asthma) I don’t think this would work for me. Sometimes being a diabetic (person with diabetes) just stinks – I really need something better than the same medication delivered in a different way.

    How about figuring out how to get the insulin directly into my duodenum? Now THAT’S something I’d be really interested in.

  3. Joan
    Joan January 22, 2007 at 8:52 am | | Reply

    However insulin is delivered, it still brings with it the dreaded hypoglycemia. That’s the thing I hate.

  4. Chrissie in Belgium
    Chrissie in Belgium January 22, 2007 at 11:11 am | | Reply

    For me it is NOT how you deliver the insulin that is the big problem. The problem is my inability to balance all of the ingredients of life. Does Exubera really make balancing simpler? Doesn’t it just add on another thing to worry about – hurting your lungs? I am not eager to try it – I like my pump, but the balancing problems remain.

  5. Vicki
    Vicki January 22, 2007 at 8:36 pm | | Reply

    The reason Jen had such unsatisfactory results with insulin was probably because she was taking a “standard dose,” which is what most doctors prescribe. I don’t really understand why they think this will give good diabetes control, since one doesn’t eat the same thing every meal.

    The proper way to dose insulin is to match the fast-acting insulin to the carbs eaten at each meal – like pumpers do. It’s entirely possible to do this. It does require a lot of work to set it up, learning your individual carb-to-insulin ratio, but once that’s figured out, it’s not terribly difficult.

    Also, a mixed insulin rarely works well either. One needs to take a separate long-acting basal for between meals (such as Lantus or Levimir) and a fast-acting insulin such as NovoLog or Humalog matched to carbs for meals with an individualized dosing plan. This really works.

    I’ve been using this system for more than 8 years now and my A1C has ranged between 5.8 and 6.2. Diabetic for almost 10 years now with no complications in sight. And I’m working hard to keep it that way.

  6. Florian
    Florian January 23, 2007 at 2:16 pm | | Reply

    Jen,have you had any bad colds since you started using the inhaled insulin? I am talking about the type of chest cold where you feel like someone is sitting on your chest and it is hard to breathe. Inhaling insulin might be difficult feeling like that. Having to eat a fixed amount of carbs with every meal would be a problem for me.
    I think Pfizer will have a big problem getting the present version of their delivery system accepted. I am watching and looking for the liquid insulin that will be delivered orally and nasally. I think that will be more acceptable. Until then I will stick with the Levemir (basal) and Apidra (bolus) and carb counting.
    Florian (Type 1, dx 1967)

  7. Brian Haws
    Brian Haws February 9, 2007 at 10:57 am | | Reply

    To each their own. You don’t want to take Exubra then don’t. For eight years my wife has gone up and down trying to control her diabetes and nothing would work. She’s happy now and it’s under control like it’s never been before. What happens with the rest of you with whatever system you use doesn’t concern me in the least. Only Jen does and this is the best thing yet that she’s been on.

  8. Walton
    Walton February 11, 2007 at 11:54 am | | Reply

    As an Asthmatic & Diabetic, this seems like the BEST delivery system for someone who ALREADY HAS USED an INHALER.

    [Scott, above seems like an idiot to be making statements like Asthmatics won't like this delivery system.]
    I hate carrying needles, alcohol prep pads & Refrigerated insulin around every where I go too. But I do it in order to live. A drug that can offer me MORE MOBILITY & LESS HASSLE is one I am ALL for. If we took a poll of DIABETICS, those who prefer sticking themselves, with insulin, testing pin sticks and needles with those who don’t want to stick themselves anymore I am sure who would win hands down. Show a kid in the hospital and inhaler versus a needle & see what reception you get.

  9. Walton
    Walton February 11, 2007 at 12:05 pm | | Reply

    One more thing that hasn’t been addressed is COST of Treatment.
    If I could get away with only paying $35 co pay for an Insulin inhaler and $35 for testing supplies that would save me around
    $80 a month for the Insulin, insulin needles, testing supplies,asthmatic inhaler the $150 a month I normally spend. This is addition to the 380 per month I spend for health Insurance !

  10. Walton
    Walton February 11, 2007 at 12:11 pm | | Reply

    I forgot the $60 co pay I have to pay to have my a1c checked every 3 months + the $35 fo pay for seeing the Dr. You add that up & you will see that maintainance of this disease in a controlled position comes up to a pretty expensive annual bill.
    http://www.diabetesselfmanagement.com/blog/blog.cfm?commentID=162

  11. cindy skolnik
    cindy skolnik March 8, 2007 at 8:21 am | | Reply

    I thought all diabetics should watch their carbs insulin or no insulin. I am on Exubera and we are still adjusting to get to ther right dosage. My doctor said I am one of only about 30 in the Chicago area. I have no problem with the inhaler and I have had no problems with colds etc. I have gained a few pounds but I was down to 103 a few months ago and very high blood sugars. I still have the occasional high but I think it is right that waiting 2 weeks to change the “filter like thing ” is to long. I do notice better control when I change it. Anyway I plan on sticking with it as long as it seems to improving the situation. One thing How soon before bed time do you eat dinner and take your last dose. I am still having trouble with the morning numbers.

  12. Robin
    Robin August 17, 2007 at 12:23 pm | | Reply

    My doctor is having quite a bit of success dosing Exubera by carb counting. I am just starting this so I have no first hand info yet. So far, she is seeing that it is about 1 mg Exubera per 10 mg carb. Of course, that depends on the person but the combo of carb counting and dosing seems to be working well in several of her patients.

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