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Afreeza available for sale today

Discussion in 'Parents of Children with Type 1' started by mamattorney, Feb 3, 2015.

  1. mamattorney

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    I know it's not approved for kids, but is anyone interested in this option? I'm going to ask about it at our next endo appointment.

    We had one of those days yesterday where even though bolus history was fine, my daughter went from 90 at breakfast to 380+ and got stuck (so who knows - bubble in tubing, weird pump issue that didn't generate an occlusion alarm, bad carb count, hormones?). She ended up needing a 225% (+125%) temp basal for several hours and 7 units of insulin to get her back to a decent number - way more than her correction factor says it should have taken. And it took a relatively long time to get there because while I'm aggressive with corrections, I had to do it in a couple of waves for fear of her tanking.

    I think Afreeza could be so useful for times like these to just break the high quickly and get out of her system quickly, so she can deal with the remaining (hopefully more responsive) high without worrying about stacking insulin.

    So, maybe a once a month add on . . . not a regular insulin, just a tool.
     
  2. sszyszkiewicz

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    that is exactly how i want to use it. Just to blast a sticky high.
     
  3. Christopher

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    I would be interested to see how it works, as you said, in situations like this. Danielle has an Endo appointment this week and I am going to ask about it too. Even if it was approved for children, I think I would still be a little wary of using it before I understood what the long term implications were.
     
  4. Megnyc

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    I would LOVE to try it. I have so much trouble getting highs down once I am over 500 (usually due to issue with my pump site). It can take many hours and a massive basal increase and 4-5x the normal correction amount. The second I hit 400 my ISF drops from 1:90 to 1:20. Totally insane.

    I have asthma though and haven't decided if it is worth the risk. My asthma is the best controlled it has been in my entire life and I am not sure I want to take the chance of messing that up just to bring down the very rare high. Anyone know if insurance will cover it?
     
  5. mamattorney

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    BCBS of IL will cover with prior authorization (I checked this morning).
     
  6. Megnyc

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    Thanks. I just checked and express scripts is also covering it. No prior authorization required (at least for the plan I have). Cost seems pretty reasonable.

    [​IMG]
     
  7. mamattorney

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    Our cost (the actual cost, not copays) seems similar. I'm just wondering what the 90 units means because that's what mine said too. Do you think that means that there are ninety 4 unit inhalers in each box (so 360 units of insulin)? If so, for the purposes I'm looking into, one fill would last a year I would think.
     
  8. Megnyc

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    So each box has 90 cartridges. You have 3 different options for combinations of inhaler dosages (possibly more-- that is all express scripts is offering me). 1. (90) 4 unit cartridges at $228. 2. (30) 4 unit cartridges and 60 (8) unit cartridges at $281. 3. (60) 4 unit cartridges and (30) 8 unit cartridges at $254. The costs are just coming from my specific express scripts plan so will presumably vary slightly. It looks like you get 2 inhalers per box of cartridges.

    Thus the total number of units in a box and the cost per unit varies quite a bit. This sounds like it is going to be a nightmare for doctors to write prescriptions for.
     
  9. mamattorney

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  10. Megnyc

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    I want it so badly! I am currently stuck in the 500s due to completely forgetting to bolus for my take out Chinese food dinner. It will probably take me 6+ hours to get down to a normal range and 10-12 units of insulin (and my ISF is normally 1:90). This seems like the perfect time to use Afreeza. I have decided it is not worth the risk of an asthma exacerbation for me, at least during cold/flu season.
     
  11. Ali

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    I am lucky as I never get to that 500 mark just high 200s but it still takes so much work to get it down safely in a quick time. Usually it is a 6 hour process and I use Apidra. But because of the fear of tanking and because as many have said it really is often due to an insulin absorption issue, and sometimes all that insulin you put in does decide to be active, one has to be careful. I am going to scream here because I really feel many highs and lows are due to site or set issues. My MM pump does not alarm till for me a huge amount of insulin has not been delivered, or once in a while I get those sites where something seems to impede the insulin flow, muscle?, tendon, etc, who knows but it happens. I wish the maker of the set that was a patch system with a bunch of insulin "needles" was still working, as that seemed like a great option for insulin delivery with fewer complications that the current sets. I think the insulin delivery part of pump therapy needs to be improved, especially for all of those using these systems for a long time, all sorts of tissue issues develop over time.
     
  12. katerinas

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    If I had the option I would really like to try it!
     
  13. StacyMM

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    I plan to ask for it at the next endo visit. If nothing else, I'd like to use it to sub out part of the breakfast insulin. And to break stubborn highs. I think it could be really useful for sports highs, too. If my son starts a game over 120, he just climbs and climbs. It affects how he plays and it takes a lot of insulin to bring him back down (and no, it doesn't resolve itself after he's done playing...it takes hours of bolusing and temp basaling) so this could be a great way to manage that. Not sure how willing she will be to prescribe it, however...
     
  14. hopefull340

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    I read on twitter being prescribed off label for kids 13 and over its in stage 4 trials now in children Mannkind went 8 yrs with safety testing.... allot of celebs are on it with great numbers no high or lows.. Excited for this ..
     
  15. Joa

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    Hmmm, why do you not use the good old way of bolus splitting? If you split the 10U correction boluses at one time to, lets say 5 sites, the show will be over after perhaps 2-3h.
    One-third of a given dosage needs half the time to be resorbed - vice versa. :wink:

    Regards
    Joa
     
  16. shannong

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    Yes! So many of my son's highs are due to failed pump sites. It is our number one issue when we are having bad numbers. I also don't know why they can't make tubing/connectors that don't lodge bubbles so easily. The design just seems faulty. The inhaler just isn't an option for my son though - he has asthma, so I'm not going to mess with anything that might affect his lungs.
     
  17. Melissata

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    Anyone that has bad sites happening should give the metal infusion sets a try. I wish I had done it years ago. No more wondering if a high is due to a kinked cannula. I don't understand why endo's don't promote their use a lot more.
     

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