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Serious pump issues! HELP!

Discussion in 'Parents of Children with Type 1' started by CaitlynGrisham, Feb 20, 2013.

  1. CaitlynGrisham

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    Ugh, so this has been a long process that has been giving me grief.

    For the longest time, my sites have been turning red, hard, and itchy. I thought (as did my Endo) that the teflon in the cannula was what was causing me to react, so I switched to the Sure T sites. It was still inflaming, so we switched adhesive types on the IV prep that I was using. Still no change. Finally, we layered hypoallergenic IV prep under the site and pushed it through the tape, thinking the adhesive was the problem.

    I am still reacting!

    I've done some research, and I was wondering: have any of you had any issues with insulin allergies? I am wondering if Novolog is the problem...I have been on Novolog for almost 13 years, with the exception of a brief change to Apidra that didn't last very long (i.e. 3 months, max). The problem with this was that my dosages were raised almost 300%.

    The sites are getting so swollen that I have had to up my basal to almost 80 u per 24 hours just to keep my bgs around 160 mg/dl.

    It's gotten to the point where my sites are becoming red and swollen/painful so terribly that I can't even wear shirts/pants over the site areas for some time after the sites are removed.

    Ugh, basically, I am very fed up and I feel gross. Does anyone have any input on this?
     
  2. sooz

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    My only thought is, if you want to find out if it is the insulin, you could go back to MDI and see how your body takes it. I'm sorry you are going through this. Good luck!
     
  3. CaitlynGrisham

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    I did do this, and the injection sites are getting red and swollen. They aren't turning hard, but maybe that's because the insulin isn't being "held" there, per say, by the cannula.

    Thank you so much for your quick reply. :(
     
  4. swellman

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    What did your doctor say?
     
  5. CaitlynGrisham

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    She basically gave up /:
    She told me that she didn't know what could be causing this, and that I'll just have to deal with it. I don't think that's necessarily true, so I'm looking for some solutions on my own.
     
  6. LucyAmber

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    Could it be that you have used the site(s) for so long that you are not absorbing the insulin properly?

    If it was an insulin allergy, wouldn't the insulin no longer regulate your BG's?

    So sorry you are having these issues :( :( :( :( :(
     
  7. CaitlynGrisham

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    These issues are happening after 4-8 hours of having the site(s) in. I've switched the types of sites quite a few times thinking that it might be a site problem.

    My old basals were no longer regulating my bgs, so I had to up my insulin dosage quite a bit just to maintain some level of control. I've gone from 35 u over 24 hours to over 85 u over 24 hours just in trying to maintain good bgs with this issue. I'm not sure if that is because of the insulin or not, because like you said, I would think that the insulin wouldn't even do its job at all. Hmm.

    Thank you for your reply!
     
  8. LucyAmber

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    I hope you find out what is causing this problem for you. :(

    Could you switch to a different insulin temporarily to see if the Novolog is the problem?

    Please keep us updated to what happens with this.
     
  9. CaitlynGrisham

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    I called my endo to see if I could switch to Humalog, but she doesn't think that it's possible to react to insulin.

    I will definitely keep posting about my progress with this; thank you <3
     
  10. mocha

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    I've heard of many people being allergic to insulin, especially Novolog. I've never heard of anyone having problems like this with Humalog or Apidra (not that there probably aren't people, but I've just never heard of it), but if you search on google for insulin allergy, you fit the symptoms that others have described. There's even discussions on tudiabetes about this.

    Get a script for a different insulin, Humalog or Apidra, and don't take no for an answer, because this is not okay, and you should not have to suffer through this.
     
  11. CaitlynGrisham

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    I'm glad to hear that it actually exists. I will definitely see if I can't find those tudiabetes threads.

    I will call my endo in the morning and bother her until she gives me a new prescription. Maybe then my problems will ease a bit.
     
  12. Beach bum

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    I know two people who have had reactions to Novolog, so it is possible.
    Be firm with your doctor, tell her you feel Novolog is basically no longer working for you at this time and you want to try Humalog. They are similar in performance, so it's not like you have anything to loose.

    If you are still unsure if it's sites vs. Insulin, I think I would first try the insulin via injection to see what happens. Then, if nothing does, move on to the sets.
     
  13. selketine

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    I've heard of insulin allergies ever since William got type 1 - so it must exist.

    I looked into it at one point as he was having a reaction to something - as it turns out I think he is allergic to the teflon cannula's so we use a Rapid D (steel needle) set. I'm assuming the set you switched to was also steel needle?

    I have no suggestions other than what everyone has said - try humalog. However your doctor's attitude towards this is ridiculous. I would be doctor shopping as well as insulin shopping. I hate it when doctors are ignorant and won't admit it and send you to someone who could help.:rolleyes:
     
  14. Diana

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    We used Humalog when my son was really little. He used to get these nickel/quarter sized red welts at the injection sites. The welts would take several days to resolve The endo said he had never seen it before. My son occasionally complained about pain or itching. The insulin worked fine. Endo was reluctant to say it was an allergy, and theorized it had something to do with my injection technique :rolleyes:

    We switched to Novolog and it all vanished - never happened again. The endo concluded he was allergic to something in the Humalog.

    I don't know if he is truly allergic to something in Humalog, but it left enough of an impression on me that I won't let him put Humalog in the pump.

    He uses Apidra now.
     
  15. MomofSweetOne

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    When I asked our endo team about switching to Apidra, one concern they voiced was that if my daughter went off Humalog and Apidra didn't work well for her, there was a chance that she might react to the Humalog when resuming it. We decided not to risk an allergic reaction since she was doing fine on Humalog.
     
  16. mmgirls

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    we switched insulins, not because of any visiable allergy but because it just stopped working well. We had almost doubled her dose and were still not seeing great numbers, basically correcting every 2hrs just to get her in the 200's. We looked at switching sets, but someone told me that it could be the insulin, and honestly changing insulin is the simplest solution. We got a sample vial from the endo and it was like night and day. Wwe had to drop everything back down and felt good.

    Although they are supposed to be very similar I have been told that they have different PH's and another insulin just might work better with your body chemistry.
     
  17. Chippy28

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    I have this exact same problem, unfortunately. It started about 3-4 years ago. At first, the reaction was very slight and rarely occurred, but progressed to the point of constant itching and horrible sores with terrible BGs. I have been on Novolog since I was diagnosed over 9 years ago. My endo had me try Humalog, Apidra, and Regular...all of which I reacted to. I tried multiple different infusion sets (both teflon and steel cannulas) as well as different tapes and barriers...no help. I even pulled out my old Minimed pump to see if I was somehow reacting to something in the Animas tubing/reservoir. I don't react to my Dexcom sensor, but I do react to an insulin injection. I saw an allergist who after much research, basically told me that I am reacting to the insulin or something in the insulin solution, but there is no way to test it. He would have recommended being put on a pump and trying the different insulins had I not already done so. Other than that he recommended taking an OTC antihistamine like Allegra or Zyrtec, which does help a bit. Thankfully the nurse practitioner at my endo's office thinks outside of the box. She put me on Victoza. Victoza is actually indicated for use by type 2s only (which meant a huge fight to have my insurance cover it), but she has seen positive results in the couple of type 1 patients to whom she prescribed it. She felt that my allergy was causing the insulin to not work as well which meant that I was increasing my overall dose which was then causing a more of an allergic reaction which meant that I was increasing my insulin dosage yet again to counteract the insulin resistance/increasing BGs...it was a never-ending cycle. The Victoza managed to break that cycle and as long as I am able keep my TDD under 60-65 units on average the allergic reaction is much more manageable.

    Had the combo of Allegra and Victoza not worked, I was looking at adding a liquid steroid to my insulin, which is not an option that I was interested it, but ultimately would have done it if needed.

    I am so sorry to hear that you are going through the same thing as I am. I don't know if any of this will be helpful, but I did want to let you know that there are others out there who are also dealing with this issue.:)
     
  18. Sarah Maddie's Mom

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    Did they say if this was something unique to a H to A switch?

    It's news to me and if it's actually a concern rather than a tactic by your endo to keep you from switching to an insulin that perhaps they have little experience with, then it's very worrying.
     
  19. MomofSweetOne

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    Nothing specific. My daughter has lots of allergies, and they said there is a risk after being on an insulin and then switching, that when switching back there can be a reaction. Rather like having the first encounter with a problematic food/substance being minor and then next severe because the immune system now recognizes it and reacts more severely. I understood insulin allergy is rare but does happen (or an allergy to preservatives or something in the insulin), and they were willing to let us try Apidra. I made the decision it wasn't worth the risk since we weren't having problems with Humalog.
     
  20. Sarah Maddie's Mom

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    I can see how having a lot of existing allergies might change the situation. Thanks for elaborating.;)
     

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