More pump site issues (irritation, soreness, bleeding)

Diabetes Technology Insulin Pumps
1

I hate to post about this AGAIN but my issues are not over yet. *sigh*

I posted about two months ago about how I switched to contact-detach sets during the summer and not only did my insanely itchy, hive-y, red sites that barely lasted two days mostly go away, but my blood sugar control improved IMMENSELY.

Fast forward two months and ... so much for thinking I'd solved my problem.

I'm using contact-detach sets and, since they don't stick at all (fall out within a few hours) Skin Tac to stick them down. I noticed within a week that my skin did not like Skin Tac. Not only did it make the actual sites red and painful when I removed it, but it also appeared to make my skin dry and flaky anywhere it touched, even on completely bare skin.

So, I tried using only minimal skin tac, sticking it on the underside of the adhesive patch rather than on my skin. Seemed to work MUCH better. I thought my problem was solved!

Over the past two weeks, though, my sites started to get irritated. Bright red under the adhesive and painful where the needle was, and sometimes (maybe about half the time) itchy, though not half as bad as before.

The past four infusion sets that I have used have all essentially failed. I had one on my leg that was painful by the end of two days and when I removed it there was a huge, red, raised, painful lump that is still there (though diminished) a week later. Then I tried one on my hip which only lasted a day before it got painful and itchy and I had to take it out. It had dried blood on the adhesive and bled when I removed it. Then one on my stomach, which also got painful and, when I removed it, had a raised, painful lump underneath. Then, I went through one night where I tried FOUR infusion sets. All of them either bled or were so painful I couldn't stand them, before I finally got one in.

That was last night. The site I finally ended up inserting was slightly painful since the beginning and tonight I happened to look down in the right lighting and notice the adhesive was covered in dried blood. So I removed it. I also noticed bruises and marks all over my body from the past week of sites (including the three attempted sites).

What's more, my blood sugar control has just completely deteriorated over the past two weeks. Over the past four days I have had a grand total of TWO readings in range. The rest have almost all been double digits (meaning over 180 mg/dl). I have tried cranking up pump settings, new insulin, new sites (as described), and taking injections, and nothing seems to make much difference. I don't have ketones. I definitely think my site issues right now are playing a role.

Does anyone know what might cause soreness and itchiness and irritation/bleeding from needle sets? I'm not exactly skinny, so I find it hard to believe I'm hitting something painful this many times in a row. Could it also be due to some sort of allergic reaction, even though it's different than my past site reactions (which were mostly just itchy, itchy, red, hive-y, not painful or bleeding). I tried contact-detach sites back in 2011 for about three months and had almost exactly these issues, so this isn't the first time.

I am just getting so frustrated at my body. At this point I am so ready to ask my endocrinologist at my next appointment (in mid-November) if I can try MDI for three months to see if that's better. My control wasn't as good on MDI (instead of mostly having problems with highs I had a combo of highs and lows daily), but at least it would let my body take a break and let me figure out if my issues with highs, etc. are really from site reactions. I really don't want to give up the pump, but I am getting sick of having soooo much trouble with infusion sets/sites!!!

2

I have a recollection that maybe you've mentioned that you have allergy issues besides this. Perhaps a way around this would be to rotate sticky stuff options and set types and use a different combo each time? It seems like many of the sites work for a while and then get itchy but maybe if you rotated it would confuse the allergy situation if, in fact, that's it? I still prefer Opsite Flexifix but have only tried IV3000 which wasn't sturdy enough for me.

LINK

3

Hey Jen it's me again!!

I have similar problems (not as bad) but I do have this gut feeling that my irriated sites are the reason for my highs. I feel like I am still fairly new to the pump (1 year) so still learning. But I am also thinking about trying MDI for a bit, just as an experiment.

You can PM me anytime to discuss this! I feel scared of MDI, not so much fearing the lack of control but maybe the inconvenience. I remember always worrying about transporting my insulin and things like that. But I actually just ordered a Frio Pack from amazon just incase I decide to make the temporary switch. Keep me posted on your status!

I hope things clear up soon.

4

Yeah, I have had allergies and related issues my entire life, so this would just be adding to the list. Every time I get a new doctor they comment on how many allergies I have, and are always surprised I have no medication allergies. Well, this infusion set stuff is almost even worse!

I'm 99% sure the itchy problem is an allergy, it's the soreness/bleeding that doesn't seem to fit that pattern (but maybe it's just symptoms of the site getting irritated below the skin or something). I actually did go looking for a comfort site last night to try rotating. I couldn't find one, unfortunately, so I just used another contact-detach but without skin tac.

Last night I woke up in the middle of the night at 2.3 (41 mg/dl), ate 25g worth of glucose tablets, and woke up this morning at 5.4 (97 mg/dl). This is a big reason I think my control is infusion set related, I have the odd set where I will suddenly experience a bunch of lows. But after about a day, as soon as it starts getting irritated, I go back to being high.

I just picked up three boxes of contact-detach sets yesterday, so I may see if I can find a way to get a box of something else to try rotating. I'll probably also call Animas and order some of the adhesive remover stuff, and maybe some IV3000. I think it's just finding the right combination of stuff, but in the meantime I feel like I am ruining my skin! It also doesn't bode well to wearing a CGM which I hear people wear for 1-2 weeks. If I can barely keep something on my skin for 1-2 days I can't imagine having it there for 1-2 weeks!

5

On MDI I would just transport your insulin the same as in the pump. It doesn't need to be refrigerated or anything, just kept shielded from direct sunlight (unless you live in a REALLY hot area).

What type of set are you using? Have you tried different ones?

Do you have allergies to begin with? I feel like this all stems from my body being so hypersensitive to everything! I take an antihistamine every day year-round and I notice that when I don't take that (because I periodically try to stop ... I hate daily medication) my sets get much more irritated, which is partly why I believe it's an allergy. And yeah, I definitely believe the irritation affects my control a lot.

I will let you know if I come up with anything. I have a feeling that it's just a matter of trying different things until something works. It's annoying that the first few times using something always seem fine, because I don't think those sample packs pump companies give away would be much use.

6

Incidentally, I do have issues with many earrings making my earlobes red and itchy and with many necklaces making my neck itchy and, if I don't take them off, causing painful little bumps to pop up along the back of my neck where the necklace was touching. I'm sure the metal in the infusion set is different than the metal in jewellry, so I'm not sure it's related, but I just thought of it today while putting on jewellry for work.

7

I do have mild eczema that mostly bothers me in the winter, and mostly only on my hands, elbows, and knees. I did wonder if my skin hating Skin Tac might be related to that, but it's always been mild and I've never seen a specialist about it. Might be a good idea to see a dermatologist, I've never seen one before. I've only seen one allergist and I was not impressed with him, so I've put off getting another referral (as it's hard to ask to be referred to a specific doctor, so many aren't taking patients).

I do take allergy medication year-round (antihistamines and various others) with the type and amount varying depending on allergy season. The allergist I saw strongly recommended allergy shots because I'm allergic to so much that's impossible to avoid, but it's just been a matter of finding the time and finances (as they are only partially covered).

I think I will call my endocrinologist and see if I can move the appointment up, and ask if I can get a referral to a dermatologist or allergist. Thanks for the suggestion!

8

I'm so sorry this is happening, Jen; I was so hoping this would be the answer for your site problems. Not to rub it in, but remember I'd loved the Contact Detach but then had a problem with them so stopped using them? I've been back using them again with no problem at all for awhile now and always keep them 4 days (knock on wood).

I don't use any adhesive (though I did notice the CD pulling up around the edges by the last day, a problem I never had with the plastic sets), so I can't advise you there. Perhaps someone else can advise something that is allergy sensitive.

The only suggestion I would have is since you are subject to allergy problems in general if that might be the area to explore. Like rather than your endo, take this specialized D problem to the person you see for allergies? Perhaps they will do testing, or have some useful suggestions regarding the set use.

Beyond that, yep, I could understand why you'd consider going back to MDI. Perhaps you've learned enough while on pumps (not sure how long it's been) to do better on MDI now? Sorry all this is happening, I know how frustrated you must be!

9

I am VERY allergic to penicilin...I get terrible terrible drug rash from head to toe. I have had other situations where I broke out into pretty bad hives and could not figure out what triggered it...but this was years ago before D. I think.

10

Hi Jen. I went off the pump because I ran out of sites that would absorb well with infusion sets. I did in fact use the knowledge gained from using the pump, and while my control is not quite as good as it was on the pump, there are still some pluses. For instance, I was never very good at filling cartridges--darn bubbles. And I developed an allergy to latex on the pump.

I would recommend that if you do go on MDI, get a prescription for 1/2 unit syringes; I use BD, but I'm told that Walmarts have a brand as well. Lantus and Levemir seem to work differently for different people; I love my Levemir. Lantus gave me a chronic headache. Whatever you decide to do, best luck.

11

The website of the Contact Detatch sites says they're stainless steel. Stainless steel has nickel in it, which is a very common metal allergy (of metal allergies, that is, which aren't very common at all).

Everyone has always told me that the nickel in the steel alloy can't hurt you and you can't react to it. But I know that I react to stainless steel earrings and necklaces. I won't wear stainless necklaces anymore--silver or nothing now!

I would imagine that a stainless steel set inside "raw" skin would provoke a stronger reaction than earrings or necklaces would. I wouldn't be surprised if that's what it was from.

12

Thanks, Zoe. Four days is great! For the past year or two I've been changing all my sites after two days max, and frequently only one. I am interested in using a CGM but I have no idea how my body would react to having something there for a week or two!

I'm not sure I've learned that much from pumping—I already knew what most of my "problem areas" were before starting (dawn phenomenon, hormones, etc.). I used MDI for two years and have been pumping for almost seven. Most of my problems with MDI came from not being able to fine-tune basal insulin and from not being able to rapidly adjust my insulin for things like hormones. Otherwise, I didn't mind MDI all that much, although I do like the pump since I do like technology!

I have thought about bringing this up with an allergist but, given how much most doctors know about pumps, I don't know that they would know all that much. The only allergist I've seen I saw a few times and really did not like him. So I've been holding off getting a referral to another one because I'm nervous I might end up with this guy (it's hard to control who a referral goes to here since so few doctors are taking new patients). It probably would be helpful to get some testing and figure out exactly which components of sets/needles I'm having problems with.

13

You know, I've wondered about latex. How did you find out you were allergic to it? I don't think infusion sets have latex in them, but I know that insulin stoppers often do. I also have food allergies to potatoes (severe) and bananas (mild), which I know are both somewhat related to latex. I've also had problems with irritation from some bandages and tapes since long before I started on the pump. It wouldn't really explain the problems I'm having with the needles (although the comment above about nickel makes a lot of sense to me), but it's something I might ask about next time I see an allergist.

I agree about 1/2 unit needles. I have to use insulin pens as I can't see to measure with syringes, and I don't know if there is a 1/2 unit pen available for Apidra, so that could be problematic. (I know there is one available for Humalog and NovoRapid, though.) I have only used Lantus, but from what I have read of Levemir I think that sounds more flat and more flexible. So I think I'd ask for Levemir, if it comes to that. I have a prescription for backup Lantus in case of a pump failure, but I think my endocrinologist seems pretty open to things I request.

14

Thanks, this is very interesting! I had no idea that stainless steel had nickel in it. I don't know exactly what I react to in jewelry, or if there's a way of finding out. My mom has had similar problems with jewelry, so I think it's partly genetic.

It would really suck if I'm allergic to BOTH the plastic cannulas and the stainless steel needles. Plus the adhesives make me itchy, although I could honestly put up with that if it wasn't for these issues that seem to be impacting my blood sugar. *sigh*

15

I found I had a problem with Band-aids, a large red rash that was a nasty combination of burning and itching. I started using latex-free bandages and found they worked without a problem.

There used to be a magnifier to use with syringes; that might help if they are still available. What I do with my Levemir pen is to withdraw insulin with my 1/2 unit syringes rather than with pen-needles; I also use the syringe with a vial of Apidra. Altogether I take about a dozen shots daily. Maybe your doctor has a sample of Levemir if you do decide to do MDI for a while?

16

Surgical stainless steel is supposed to be "safe", but I definitely react to it. My mother also had an allergy to jewelry, and she decided that it must be the nickel after mine was diagnosed. (Because why should she bother going through the patch testing when she could use mine?)

Are you sure you were reacting to the plastic cannulas rather than the adhesive? I react to the adhesive in Band-Aids; I wouldn't be too surprised if that was your problem. An allergy to plastic would be much more strange, I think, than an allergy to the adhesive.

17

Someone in this https://forum.tudiabetes.org/topics/small-dose-precission-with-insulin-pens?commentId=583967%3AComment%3A2659281 thread said that you can use the Luxura HD pen with Apidra cartridges--and they tell you how to do it, too. If it works, then you have Apidra in 1/2 unit doses!

18

I had to reply to your post because I have the same site problems and the same earring issues! The infusion set issue is so frustrating. Curious to see if MDI helps you at all. Please keep posting. I'd be too nervous to go back to shots while I'm teaching but maybe on summer break. My sites bleed so much it looks like a gunshot wound. and the bruising...oh my..

19

When I brought it up with my endocrinologist, he said that most people either had a problem with the cannula or the adhesive. He said that a problem with the cannula would usually result in itchiness right where the infusion set entered the skin, while an adhesive allergy would result in itchiness matching the area of the adhesive.

My reactions to the sites with cannula would be intense itchiness right where the cannula was (and, for the angled sets, often following the path of the cannula under my skin), with a rather large hive right where the cannula punctured the skin. (It looked almost exactly like what a positive allergy test result looks like.) To a lesser extent I also got itchy, red, and sometimes a rash under the adhesive.

So I told him that I'm pretty sure my problem was both, but mainly the cannula. I have always had some problems with Band-Aids and medical tape, usually with burning/itching and a rash after it is removed. I do wonder if this has more to do with simply sensitive skin, or dry skin and eczema, rather than an actual allergy, as I sometimes get rashes from just clothing or from gym equipment, etc. But the area around the cannula always seemed significantly more itchy and irritated than the rest of the site.

Before switching to the needle sets someone suggested that I tape the cannula set to my body without actually inserting it, to see if there was any reaction to the adhesive. When I did this, I got virtually no reaction except for a tiny bit of itchiness (but no "hive" with intense itching, rash, etc.), which is what finally made me decide that the cannula was my main problem and the adhesive was secondary.

I don't think it's the plastic itself that causes the allergy, but the coating on the cannula. I don't think this type of allergy to the cannula is that rare—if you look in most of the major diabetes books (Pumping Insulin, etc.) pretty much all of them mention needle sets as an alternative to cannulas for people with an allergy to them.

20

Do you have issues with the cannula sites as well as the needles? What was said above about stainless steel and nickel is very interesting, and to me it makes a lot of sense. I would prefer not to go back to MDI ... When my sites aren't irritated (like the past 18 hours or so) my control on the pump is AMAZING. The latest set I inserted late last night seems fine so far. I used no Skin Tac and although the tape is peeling up already, it doesn't seem itchy or irritated at all and my blood sugars are great (granted, with my cranked-up pump settings). I don't think I would get the same control with MDI, so it's a last resort, but if I have to, I have to ... I get SO sick of the non-stop irritation and highs that are only interrupted briefly.