Infusion set allergy update - SO much better! (with pictures)

Type 1 and LADA
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I have posted a few times here about how I thought I had developed an allergy to pump infusion sets, I believe both the adhesive and (mostly) the cannula. For the past two years or so I tried SO HARD and could not get my A1c to stay below 7.5%. I was sooo tired of completely random blood sugars, random extreme highs and lows, that made no sense. I literally felt like my body made no sense. Things seemed completely inconsistent. My endocrinologist asked why I was so high so much and didn't believe when when I said I didn't know!

It was common for my old sites to look like this upon removal after two days (this picture does not convey the redness or itchiness!):

Inflamed site

and this two days after removal (still super itchy):

Itchy site

I thought maybe this could be contributing to my blood sugars, but I didn't realize how much impact it might be having. I thought it was mostly just itchy and annoying.

About a month ago I switched to needle sets instead of the cannula ones. I had tried these twice before but always found they bled, but decided to give them another try. This time around I got the 6mm ones instead of 8mm and there is minimal bleeding. I noticed a huge difference in my sites right away. They still get mildly itchy under the adhesive patches, but when I take the set out my skin is completely normal. No bright red rings or raised areas around the adhesive, no huge welt where the cannula was, no hives or rash, no intense itching that lasts 2-3 days after the site has been removed. In the past I would take a site out and the first thing I'd do was scratch. Now, I take it out and an hour later can barely even tell where it was!

Over the past two weeks my blood sugars have improved IMMENSELY! It's like night and day!!! I hardly ever talk to my parents about diabetes anymore, but yesterday on the phone I was telling my mom how happy I was with my control. It's not perfect, but compared to before it is amazing! One or two readings out of range per day is such a big difference over one (or no) readings IN range during an entire day!

Here is a picture of my meter readings a month ago compared to now:

Blood sugars before

Blood sugars after

If this keeps up, for the first time in a long time I'm excited to see what my A1c might be (last one was 7.7%). But really, I have never had a stretch of two weeks straight where my blood sugars have stayed this consistent ... not in a really, really long time. So I'm hoping it will keep up!

I would still like to find something I can put under the adhesive to stop it from getting itchy. But that itchiness is so minor compared to before! I just don't want my body freaking out and have it develop into something major again.

Just wanted to share. :)

1 Like
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Jen, how exciting!!! I opened this thread expecting to see you found a solution to the itchy allergic problem which would have been cool enough; but to have such an impact on the blood sugars you've been struggling with for so long! I'm so happy you decided to give the metal sets another try and soooo happy over the result. Congratulations!

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I thought that having irritated sites could be contributing to my infusion sets "dying" at random times (readings of 400+ that wouldn't come down), and I hadn't been able to wear sites for three days for a long time because they would just die. But I didn't think that it could be contributing to the problems I've been having with my overall control. I think I've always had a bit of an allergy to the infusion sets - I found a post I made in 2007 or 2008 complaining of itchy sites and hives - which is probably why I assumed for a long time (years) that a bit of itchiness and inflammation was normal.

The highs I've had during the past few weeks have, for the most part, made sense (the lows, not so much). And these new 6mm needle sets are working MUCH better than the 8mm ones I tried. The other day I had my site feel a bit sore, and then my blood sugar was 200+ twice in a row, so I changed it. Blood sugar came down immediately. That is one huge difference I have noticed, highs usually come down with a single correction. Before I would often correct a high for half a day before it would start to come down.

I think if this is what diabetes is "supposed" to be like, I can see how people can see it as a sort of game, rather than an endless battle with frustration.

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Jen - Congrats on figuring out this long standing problem. This bodes well for your overall control; you'll also feel a lot better.

Allergies are a misfiring of the body's immune system. I could believe that your site allergy caused inflammation and local resistance to insulin absorption.

I've used a few of the 6mm and 8mm Contact Detach sets. I liked the 6mm ones more as well. I did find that I had to change out at 48 hours or it started feeling sore.

That's good news! Your before and after meter pics are dramatic.

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I'm pretty sure the instructions for the Contact Detach sets say to change them at 48 hours. I've been changing my sites at 48 hours for years now, so I just kept up the practice.

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Just curious but with the adhesive have you tried any products that put a layer between the skin and adhesive? I think "Skin Prep" claims to. Then there's some sheet material, and then you have skin tac.

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I have tried Tegaderm and IV 3000 which both seem to get as itchy/irritated as the adhesive on the site. I have heard of Skin Prep but have not tried it. I think my main problem was the cannula. The adhesive gets a bit itchy, but doesn't seem to get nearly as irritated or inflamed as the area around the cannula did.

Can it be used instead of alcohol, or are they both used on a new site?

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So glad to hear this, Jen. It’s nice when you can immediately see benefit from changes your make. Hope the major itches and rashes stay away:)

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Alcohol is the 1st ingredient and they are just like alcohol wipes except they have some added stuff that leaves a thin film/layer when it dries. Seems to clean better than alcohol wipes as well. What I have is Smith&Nephew #420400.

If you PM me an address, I can send you a couple to try. They have them on Amazon, and my hospital pharmacy sells them over the counter.

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wow, from the photos that is a major improvement! you must be ecstatic! may it continue!

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Thanks! It's gotten a bit bumpier -- the past few days I've bounced between high and low a lot and that middle section is looking pretty empty again. But it's still much better than I was getting before, so hopefully I can sort it out (or it sorts itself out) soon.

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Am I happy for you to read this posting :) ... it pays of to experiment , LOL ...and please remember scar tissue issues !!

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I try to keep my sites rotating to avoid scar tissue issues. :) My blood sugars have been bouncing between high/low for the past three days, not much in between. I think probably due to hormonal issues, if you know what I mean. LOL. I am hoping once that passes things will settle down again!

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I want to share with everybody possible what I've recently learned about skin irritation with my CGM. Mine was HORRIBLE, an unbearable itching with hives to boot. I found a blog where a woman talked about using a pad under her CGM to keep the adhesive off her skin. I tried using my Tegraderm patches that I was putting OVER the CGM and I've been irritation free for over two weeks. I am so relieved because last thing I wanted was to give up my CGM. I'm using the Dexcom G4 and LOVE IT. So much better than Medtronic ever was. Now I want a new pump............ :)

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I’m glad u found an answer. I have struggled too.
My answer was to use skintak wipes. Then a small dot of neopsorin in te center. Then a iv3000 over it. Then I poke throughout the iv3000 into my skin. The iv300o keeps most of the adhesive out. But some runs down the cannula after 3 days. But the neopsorin keeps it out. It also acts to prevent inflammation at the site. My sites are so good now. It looks like I just installed them after three days. No redness no inflammation. It took years to perfect it. But now it’s just part of my site change. I don’t have any trouble with sensors so I don’t do anything with those. Just install and cover with tape.

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I used SKIN PREP wipes to put on first. Then my adhesive allergy got worse I added either tegaderm or IV3000. Good luck. I ended up switching back to MDI after 9 years. I feel so free.

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soooo glad you are doing better, have you tried looking into more holistic treatmeents for you sites after the fact, I've heard apple cider vinegar and tea tree oil are good for lots of things. just a thought the good thing is you aren't having the crazy reaction to you your sites anymore! hope it keeps going better for you. best wishes, amy

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I am having the same problem with my blood sugars being erratic. It's so frustrating. I have occasional problems with the omnipod sticky adhesive but not continuous. So you are on needle sets. Forgive me but what are they, I have only ever been on omnipod. Thank you Tricia

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The just use a metal cannula instead of a plastic one. Trouble is, that they are known to cause more scar tissue then plastic. But if you can not make the plastic work, you have no choice I suppose.

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It makes sense a metal needle would cause more scar tissue, but I'm pretty sure having inflamed sites after 1-2 days with a plastic cannula might cause even more scar tissue than the needle sets.