Allergy. Maybe. What?

A small problem.

Beginning of time – February 2014: change infusion set every 48-72 hours. Skip merrily everywhere we go without a complaint or care.

February 2014: Things become slightly wretched.

Begin to need to change infusion set every 48 hours promptly or face a kind of sudden high that isn’t resolved via correction bolus. Begin pattern of: see high (hello, you!), correct w. syringe, and think, “Dang. We need to remember to change the set promptly and for sure every 48 hours.” Notice small, red, non-oozy bump upon removal of old set.

March 2014: Wretchedness frequency/intensity increases.

Always remember to change the set within 48 hours. Pat self on back. But then notice pattern of kind of sudden highs around 40, 38, 36 hours that aren’t resolved with correction boli. Correct with syringe, change site, yadda yadda yadda and think, “It is dawning on me that this is getting worse and worse.” Notice larger, redder, sometimes slightly oozy (a teardrop amount–lymphatic system is weeping in sympathy?) bump upon removal of old set.

Middle March 2014: Realization that this is not going to just go away or improve dawns on me. Oh bother.

Ask endo if we can/should/might switch to metal sets. Yes, but Animas says the only way to get the sets is if an Animas rep brings the sets to the endo and trains us to use them. Endo sent all information to Animas over 1 week ago, to request a rep do this procedure. Animas is still locating the rep, it seems. Is the rep very shy? Or what? Why is this taking so long? It feels rather pressing from my point of view. I thought everything would happen within, say, two days. Wrong.

End of March 2014: Something has to happen.

Ohhh. Are we supposed to return to Lantus while we wait for that rep to appear? At this rate, by the end of the week we will be kachunking every 5 hours, which seems a bit much. Right? Or what? So. Right. I’m out of ideas.

We have Lantus pens in the fridge. Am I supposed to know what to do with them? I am, aren’t I? But I don’t. I imagine you take the u/hour of your lowest basal segment, multiply by 24, inject that amount of Lantus (remembering to do so daily, please), and prepare to do a lot of correcting.

?

What do regular people do in this situation?

And is being allergic to teflon (or whatever is in Inset 30’s) going to turn out to be another big to-do, celiac style? Or is it just a matter of not putting teflon (or whatever) under the person’s skin?

 

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13 responses to “Allergy. Maybe. What?

  1. Really sorry to read this is still a problem. You have enough to deal with, without the holdup from the manufacturer. Hope it gets better for you very, very soon.

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  2. Regarding the metal-cannula infusion sets, I’m pretty sure Sara (Moments of Wonderful) uses them with her Animas pump. It could be the “Sure-T, Luer Lock Edition” from Medtronic (I’m not quite sure), but I’m quite confident you can get them without resorting to hand-delivery from your rep.

    Generally, infusion set prescriptions are somewhat broadly-written and you can switch from one type to another without going through the endo. That’s my experience, anyway. If you get yours from a third-party supplier, I’d ask them. But definitely get in touch with Sara.

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    • Katy

      Sara DOES use the metal ones. And she is my idol. This will be just one more thing I can copy. Yay!

      We can switch to the metal ones with our next order, but there’s no way to try out the metal one without a sales rep/endocrinologist combo appointment. I.e. Animas can’t/won’t send us one to try. Wahhh.

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      • You called? 😛

        That is the weirdest thing ever that they won’t even let you TRY out a sample set!! I know they have tightened up the “free” sets they used to send out if someone had extenuating circumstances, but that is CRAZY!

        Is there any local T1 who can help you with a “sample”?

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  3. Is the reaction at the site itself? Like, in/around the hole where the cannula went in? Or is it sort of off to the side? Like a reaction to the infusion set glue?

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  4. The DexCom rep won’t leave you alone and the Animas rep is nowhere to be found. Sounds about right.

    If you haven’t already, check out Kerri’s posts about being allergic to the DexCom tape and the solution she found. Could perhaps be applied to pump site?

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  5. mollyjade

    My endo was just complaining about Animas customer service this morning (they took away her fancy doctor’s office downloading device and gave her the annoying dongle instead).

    Can you get a prescription for topical steroid cream while you wait? It doesn’t affect your blood sugar like injected steroids do, and it might keep down the inflammation. When I had an allergic reaction to Lantus, the docs said reactions under the skin tend to be worse than reactions on the skin, and that people with diabetes tend to have more allergic reactions since we have hyper immune systems.

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  6. Carrie

    This happened to me gradually after 8 years on a pump. No dr or rep was ever able to help me resolve it. I finally went onto Lantus, and eventually settled happily on Levemir. I hope you figure it out, not just for you but for all of us with this mystery, escalating problem!

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    • Katy

      Did you try the metal kind? I’m hoping that’s the solution.

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      • Carrie

        Yes, I did try the metal kind but they were very uncomfortable and irritating for me. The Medtronic version had a higher profile at the time & it did not work well under fitted business suits. But a tween boy may not have that problem!

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  7. I’ll echo Scott’s comment – the Animas pump uses what’s called a “luer-lock” connection to the cartridge – very standard, and will work with any companies infusion set that also uses that same connection (only one that doesn’t is the new Medtronic ones, I think – but as Scott mentioned, the older MedT ones can be ordered with a luer lock).

    I mean, come down to it, any company that sells infusion sets should be able to get you a metal needle set with a luer lock connection… even something like this might be worth trying: https://www.edgepark.com/shopcatalog/item/di4541090001/diabetic-supplies/insulin-pump-therapy/infusion-sets

    My thoughts are not to wait too long on the pump rep – seems 1) ridiculous for it to take that long to get you some help, and 2) not really necessary…

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