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Experiences with Sof-sets and allergic to pumping?

Discussion in 'Parents of Children with Type 1' started by Chippy28, Jun 21, 2011.

  1. Chippy28

    Chippy28 Approved members

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    Anybody use the Sof-sets made by minimed? I was wondering what your experiences and thoughts are about this set. Is it true that you can use your own tape?

    I'm asking this because I'm still (nearly a year later) trying to figure out why I am allergic to my infusion sets, but have zero issues with my Dexcom or the tapes used to attach the pigtail connectors on the contact detach sets. I have tried nearly every infusion set out there (both plastic and metal cannulas) and have used multiple different tapes and barriers, including benedryl, under my sets. Some combinations seem to hold off the allergic reaction for a day or two, while others I have a reaction to within hours. As a result, my BGs are the worst that they have been in years because everything is so unpredictable. I am definitely not looking forward to my A1C in a few weeks.

    I have done my own research and spoken to my endo, a CDE, and a couple different people at Animas. They all have given my the above suggestions and they are basically stumped. Is it possible to be allergic to the constant infusion of insulin? My life is so much easier with the pump, so I really, really don't want to give it up if at all possible and am willing to try anything at this point. Is this something that a dermatologist or an allergist would be able to help with?

    Thanks to all that have read this far and those that are able to give any suggestions. As I am sure you can understand, this is an extremely frustrating situation and I appreciate any advice given. :)
     
  2. miss_behave

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    I haven't used Sof-Sets since 2004, but IIRC, you must use your own tape as they won't stick by themselves. The little wings sit on your skin, and you must put tape over it to hold the whole thing down. I think each infusion set package includes some tape you can use, or you can use your own. Sorry, I can't help with the allergic reactions as I haven't experienced that. Good luck, I hope you find a solution that can keep you pumping :cwds:
     
  3. Connie(BC)Type 1

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    I love the sof sets, and yes am allergic, I use Quick sets and Sils as well. I rotate tapes to use under all my sets because of skin allergies. Doc says to rotate the tapes to "trick" the skin. I also use Cavalon spray first.
     
  4. dqmomof3

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    Are you by chance using Apidra insulin? Jayden developed an allergy/sensitivity to Apidra and was no longer able to use it. I was afraid she was allergic to the infusion sets themselves, but as soon as we switched to Novolog, we never had another issue.
     
  5. Chippy28

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    Thank you for the info re: the soft-sets. I am going to have to get my hands on a couple to try out.

    Connie, which tapes do you use? Do you rotate the tape at each set change or do you rotate at a different interval?

    Jennifer, I had been on Novolog since I was diagnosed. After trying a bunch of tapes, sets, and barrier wipes, I asked my endo to try Humalog and Apidra to see if I had developed a sensitivity to Novolog. Unfortunately, I still had the allergic reaction with all three brands, but I really liked how fast Apidra worked and how well I was able to stay in range. However, I have since switched back to Novolog because I was having a lot of issues with the Apidra going bad way too quickly, both in the pump and in brand new vials. I just couldn't stand the extra layer of complexity that was added.
     
  6. sarahspins

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    Essentially yes... but only in the sense that your body reacts to having insulin injected in a single site (pumping) slightly different than injecting it via multiple sites (on MDI). I am allergic to one of the preservatives so effectively I react to any kind of insulin no matter how I inject it, but it causes me many more problems on the pump than it ever did on MDI (past a super itchy and inflamed injection site). I react less to Apidra than the others... slightly more to Humalog than Novolog or Regular insulin, but on MDI I also react to both Lantus (mild) and Levemir (severe skin reactions). When I have instances where I seem to be reacting worse than normal, switching to a different insulin for a few days usually seems to help (even if my #'s suffer a little from the switch).

    I saw an allergist and he really wasn't much help - even though we both suspect the same thing (a preservative allergy) the allergy test kits from the insulin manufacturers are mysteriously unavailable.. we tried contacting all 3 companies and various reps and no one could track a kit down.

    I tried regular insulin at the insistence of my allergist with no change. I react slightly less to metal sets than teflon sets (teflon sites go bad for me within hours now - I pretty much can't use them at all) so we also suspect I may also be allergic to "something" in the sets. His official report to my endocrinologist was that I may continue to use analog insulins at my own risk of anaphylaxis. My Endo was not happy with the news, but I am not particularly concerned about the "risk", but I do carry an epi pen.

    he was not willing to prescribe steroids at the time - he said it was a "last resort" and I don't really think he felt that I was to that point yet, however from my point of view I was really well past it - it's just hard for a doctor to accurately assess a patient who is doing a good job of compensating - I think if my control or A1C or something was considerably suffering it would make some of those "last resort" options seem more reasonable.

    Anyways, to get back to the point, what I have been trying for the past several months is applying a prescription steroid cream (prescribed for a different rash.. I had tons left over) where I put my infusion sites (and taping over this because the sets don't stick well). I have been changing sets regularly every 48 hours (even when I have had good sites and don't want to). This has been working fairly well but I think my next step is to beg and plead with my endo to allow me to try mixing a tiny amount of injectable steroids in with the insulin in my pump... if nothing else it will eliminate the adhesion issues I've introduced with the cream (I use contact detach sets, so I just tape over the needle site, which works pretty well), but I am thinking with a steady stream of a tiny amount of steroids in with the insulin I won't react as strongly to either the insulin or the sets - allowing me a bit more flexibility than I currently have in my sites and how I have to tape them down.
     
  7. Ali

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    I would first try a steel set in case you are allergic to the teflon sets and then work out from there-tapes and then insulins. Good luck. Ali
     
  8. Chippy28

    Chippy28 Approved members

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    Wow Sarah, your situation sounds a lot like mine. Is your reaction systemic or localized just beneath set? I see my endo in a few weeks, so I think I might need to bring up the idea of steriods though I am sure he'll shoot that idea down since he is certain that this isn't an insulin issue. :rolleyes:
     
  9. Lizzie's Mom

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    Did you have an insulin change at pump start?

    They changed DD to Humalog from Novolog at pump start due to insurance changing a month later. She had sore sites with redness and itching. Her numbers were wonky, too. Lots of roller coaster numbers.

    I had some Novolog pens taking up room in the fridge and started drawing their insulin into the pump and no more redness, itching, or wonky numbers (well, any more than what was normal before, ha). Her numbers were not only steadier, but an average of 30-40 points lower. I logged the differences between Humalog and Novolog for a month and then requested a PA and got it approved.

    As always, YDMMV ;).
     
  10. Chippy28

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    Nope, I have been pumping for 7 years now and my symptoms started about 2 years ago. I didn't try any other insulin until last fall. The symptoms started slowly, occurring once a month at first, but now I seem to have problems with every set.

    However, my symptoms did start shortly after switching from a Minimed pump to my Animas pump. I thought there might be something in the Animas reservoirs that were causing my problems, so I pulled out my Minimed pump one weekend and I unfortunately still had the same allergic reaction. If only it could have been that simple!! :p
     
  11. sarahspins

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    Both, though most of the systemic symptoms (usually hives, and asthma type symptoms) can't definitively be connected to the insulin.... but they only seem to happen when I'm having a worse time with site reactions. It could simply be a case of my body already being on "high alert" and being hyper-reactive though.
     
  12. emm142

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    I have sympathy for those of you who are allergic to the rapid insulins. I'm allergic to Lantus, although I stayed on it because I was deemed not at risk for anaphylaxis and had plans to start the pump ASAP. Whilst I was on it, I injected in my thigh and my entire thighs were covered in hives.

    I'm also allergic to teflon and a lot of adhesives, but I don't get allergies from the sure-T infusion set.

    What is the reaction like? When I react to tape the itchy, swollen bit of skin is pretty much exactly where the tape was (it has sharp and obvious edges). When I reacted to Lantus, on the other hand, the reaction was far more general, over the whole surrounding area. When I reacted to teflon sets it was more like one BIG itchy lump where the set had been.
     
  13. Chippy28

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    The reaction is completely localized unless the idiopathic fatigue/exhaustion that I am experiencing is related. The reaction occurs directly beneath the set and is approximately the size of the tape that is used with the infusion set. If I place tape underneath the infusion set, the reaction is still localized to the size of a silver dollar (about 1" diameter). That area is usually pinkish and at times has a very clear border, much like a raised hive. Each time though, I end up with a very itchy thick lump beneath the skin. This lump tends to last for at least a few days, sometimes up to a week, and it remains itchy during this time.
     
  14. Connie(BC)Type 1

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    Yes, I change the tape with EVERY set and CGMS change, and different tapes for each!
     

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