Metal sets

I have a question for those who use metal sets.

For those of you who follow my blogs or forum posts, you'll know I have a lot of issues with allergies. I developed allergies to the plastic cannula sets that got to the point where sets would become incredibly irritated and just stop working after less than 24 hours, and I was changing sets almost daily.

So I switched to metal sets, despite the fact that I am allergic to most jewellry (I'm guessing nickel, though I've never been officially tested). They worked really well up until a month or two ago (I switched about a year ago, last August or so). They sometimes got a bit itchy, but the sets never just outright died. In fact, I thought the metals sets *couldn't* really outright die.

Well, lately I think they have been. What I've noticed lately is that sets, like before, often appear to be dying after only a day - or if not outright dying, at least not working well. Today, for example, I've had great numbers for hte past few days (for me, meaning no highs much over 200) when I suddenly found myself at 400 after lunch. After five hours of corrections and still being over 200, I removed my set because it was feeling a bit sore - it had been in for 24 hours and up until that point had seemed fine, no pain and good blood sugars. I tried inserting it in another place but it hurt twice, and at that point I switched to a new set because I figured that one was dull and therefore making insertion hurt. I just did a correction with the new set and, judging from what's been happening lately, my blood sugar will start falling shortly.

I notice the sets aren't horribly itchy like the cannula ones, but they get simultaneously a bit itchy and a bit sore/painful after about a day when they seem to just give out. Incidentally, I've also noticed my tolerance for wearing jewellry has plummeted - I used to be able to wear earrings for about half a day before they were so itchy/irritated I removed them. Now I can't even wear them for five minutes without my ears getting hot and itchy, and if I ignore it and persist in wearing them, my earlobes stay irritated for days afterward.

I reaaally don't want to be allergic to plastic and metal sets. I already take an antihistamine year-round because I'm allergic to everything. I'm interested in starting a CGM and if I'm allergic to metal sets after only a day I don't think there's any way I'll be able to wear a sensor for two weeks (although at least that doesn't affect insulin delivery). So I'm wondering if this - a site being fine at first but getting slightly itchy and sore/painful after about a day - is normal or if it might be an allergy. I do know that if I don't take an antihistamine my siets get very itchy and hive-y, and the adhesive patch without the needle also gets itchy, so I try not to forget to take that. Also, I had a blood test last week and the spot where the lady poked me got red and itchy about a day later and stayed itchy for a few days. I'm not sure if blood draw needles are made of the same metal as infusion set needles.

I think I have answered my own question in writing out this post, but ... hoping someone might still say this is normal and not an allergy getting worse?! These sets were working so well, but if it gets to the point that I'm having crazy highs (and "crazy" for me isn't like 200, more like 400 ...) or needing to change them on a daily basis, I'm seriously going to consider ditching the pump and seeing how I do on MDI, though I think the lack of flexibility would cause other problems ...

EDIT: As predicted, after correcting with the new set I dropped from 221 to 120 in an hour and a half, and woke up in the morning at 94.

Hi Jen
Gosh, that sucks a lot. Are you sure it is not a bat series? Have you contacted the pump factory if they have changed something lately to their metal sets? I am afraid to tell you that i have no problems with metal sets at all, they work fine for me for about 3 days, and if i leave them in longer they start to itch at the 4th day.
I do hope you find an explanation and a solution for that stupid problem. it might also be that you are allergic to the insulin… Just an idea.

I haven't contacted the company, but I've been using sets from different lot numbers, so I'd be surprised if it's something about the sets themselves. It's not happening with every set, but in the past month or so has been happening more nad more often. It reminds me a lot of how my issues with plastic sets started out, happening more and more intermittently before it was happening with every set.

I've wondered about insulin sometimes, too. Years ago when I was first having this problem with plastic sets I switched from Humalog to Apidra because I thought it might be the insulin, and that made no difference. Plus, if it's the insulin, then I would think that injection sites would get just as irritated as infusion sites, and that's not the case.

So far today my blood sugar has been perfect - woke up at 94, was 76 after breakfast, 101 after eating some food and exercising, and 92 before lunch. For me, that's pretty much a flatline! Frustrating when I think that if I didn't have these site issues I might have this type of control more regularly. But MDI also didn't work for me because I need the pump's variable basal rates and ability to change settings massively quickly for hormonal issues ...

Jen,

Are you sure it is the set and not the silicone that the set is coated with to assist with insertion? By the way the best set that I have ever used was the Micro from Orbit, unfortunatley I have been told it is no longer available. It was very painless to inser and I had no issues with site longevity.

John

Jen, I certainly can't give any input to the complexity of your allergies, let alone a solution. But, unfortunately, I think you are right. I've been using metal sets exclusively for a while now and as you know I swear by them; they seem to eliminate a plethora of problems the plastic sets can lead to. And no, I don't have them get slightly itchy and sore/painful after about a day. I don't experience any itchiness at all. I do occasionally have pain, but that seems to occur randomly during the time period as if something shifts and it starts poking me. Those are quite uncomfortable but if I'm not due to change I just poke them in another place and then they're fine.

It's revealing that you have the same result with blood draw needles. I would definitely want to check the metal type (and compare it to jewelry-you would think there would be something available that was hypo-allergenic or akin to surgical steel for jewelery. Heck, infusion sets are a lot more important than pretty baubles! You would also think there would be an expert you could consult, but I don't know if it would be an allergist, a lab tech, an endo or a pump trainer. Someone who straddles those lines - John Walsh maybe? Someone high up in the infusion set manufacturing chain like Research and Development?

I am not 100% sure it's the metal since I've never been tested, but I have problems with metal jewellry (earrings, necklaces) causing soreness and irritation so I'm assuming I'm allergic to something in metal. I would be interested in getting formally tested, but my allergist at the moment leaves a bit to be desired. Maybe if I switch to a new doctor, though this guy is still better than the last one I saw... I have started moving the metal sets the minute they get sore (i.e., the set that I inserted this morning got sore tonight out of nowehre so I moved it right away).

I must admit that I don't buy the best jewellry. My mom has the same sort of problem adn can't wear "cheap" jewellry. At one point I looked up nickel allergy (which is apparently the most comment) and apparently it's sort of genetic, and stainless steel has some amount of nickel in it.

I have never been formally tested and would be interested in finding a doctor who could do that, but I'm not really sure what type would, either. I'd guess an allergist off the top of my head. I'm currently seeing an allergist who even himselves describes my allergies as complicated - but he's also not the best, or at least we are not really clicking and on the same page - so I may see if I can switch. He is better than the allergist I used to see, though, so I don't know if I'd get better or worse by switching!

At the moment I am trying to have a very low tolerance level for changing sets - if they hurt much at all, or if they seem irritated and my blood sugars are running at all high - I change it. It seems to bew working to some extent. I wish I could try a CGM out before buying one ... The idea of putting out $1,900 for a Dexcom starter package and then finding that I can't tolerate wearing the sensors would be annoying, although my endo says that even wearing it once a month or even a few times a year for troubleshooting would be benificial...