Just call me Allergic Girl

Diabetes Technology Insulin Pumps
1

Well, I was going to save this for my new allergy group, but it's still waiting to be approved, and I am going freakin' insane and have an endocrinologist appointment early next week, so decided to post and ask for some product suggestions here.

I know! You guys are like, "I thought she solved this allergy problem?!" Yeah, I did too ... But this past week my control has gone to you know where. Constant randomness, random highs, random lows, no pattern, no idea what is going on, really. For the past few weeks, every single site I've taken out has been irritated in some form or another. In each case, the reaction lasts long after (days) I remove the site.

Over the past week, sites have begun to get so itchy that I pull them out after only a day. Either that, or they hurt shortly after insertion and bleed and are already red and inflamed even after just having a site in for an hour! Last night I pulled a site out that was irritated, and a site nearby that I had removed days ago was STILL irritated. I put a new site in only to have it begin hurting shortly after. Pulled it out after only an hour and it bled, and was already swollen/irritated around where the needle had been. Tonight my new site was so itchy that I pulled it. It was already really irritated after only one day, and there was blood on the adhesive. With this one I did use Skin Tac which I know I'm allergic/sensitive to, so I think that's why it got so itchy after only a day, but I think it would have been irritated either way, like the others. I think the adhesive itself bothers me a bit, too, as the second adhesive patch also gets red and itchy (but no rashes or swelling).

*holds self back from ranting about allergies in general*

Does anyone here, who has site allergies (and a body that seems to develop new allergies to things) have products that have helped them? I know some of you have suggested things before, but I didn't bookmark them and can't remember the exact names. I'm already planning to ask my endocrinologist to refer me to a diabetes educator/pump trainer who might be able to give me different samples of things.

I'm also wondering if maybe this is all related to something like eczema. I do have mild eczema that flares up sometimes, but usually just on my hands ... And since moving to the seventh floor of an apartment building two years ago it hasn't been anywhere near as bad as it was when I was living in a basement suite. But I was thinking today maybe my skin in general just reacts to everything. I get weird breakouts of hives and rashes on a fairly frequent basis, and I have some clothes I can't wear because it causes an itchy rash. I've had at least one doctor suggest that when someone is an allergic person in general (which I definitely am) and their body is going crazy reacting to all the "threats" in the environment it sometimes just begins reacting to everything, even if it's not a true allergy.

So maybe I should see a dermatologist? Or an allergist (which I'll likely be seeing anyway for a newly-diagnosed allergic condition that affects my throat)? I feel like part of my problem is that regular exposure to something seems to "make" me allergic to it even if I wasn't to begin with. So even if something (like the metal sets) works great at first it may not work so well a few weeks or months down the road.

2

Hi Jen,

Sounds really aggravating! Sorry that this is being so difficult!

I don't have any useful information to help you, except that winter aggravates a lot of skin conditions for me.

Please know that a lot of us admire how you face challenges with so much calm, patience and collectedness!

Best wishes,

marty1492

3

Sounds terrible! Would you consider mdi’s for awhile to let your body settle down?

4

Yes - I hate the idea but I've seriously considered going back to MDI for a while. My control is terrible on MDI, though, but I think maybe if I used some NPH and/or regular to cover things like the dawn phenomenon it might be okay ...

5

Yeah, I agree with you, I think I'm having problems with allergies in general. The biopsy I had on my esophagus back in September showed I have eosinophilic esophagitis which is an inflammation related to food allergies (I have a follow-up about that on Tuesday). I also have asthma, and a severe food allergy, and already take an extra-strength antihistamine year-round for environmental allergies and find the seasons besides winter (spring/summer/fall) are utterly horrible as far as seasonal allergies go - last spring and summer I needed four daily medications before my allergies were controlled! So the fact that I'm so allergic in general, and the fact that my skin seems sensitive to many random things lately, is what got me thinking that maybe my problem is something related to eczema.

I did notice on the contact detach instructions (I was reading them to make sure I'm using the set correctly) it says to change the set every 24-48 hours. Other sets say to change them every 72 hours, but I've never been able to tolerate that long, I've always changed sets at 48 hours. So maybe I need to ask my endocrinologist for a prescription that would allow me to change the contact detach sets every 24 hours to prevent mass irritation.

I was reading about allergic contact dermatitis and what I get sounds literally exactly like that condition, down to the description and the fact that areas of prior contact can also react when in contact with an allergen (happens all the time with previous infusion sites). I'm wondering if there's some cream (or as you mentioned, maybe a stronger daily antihistamine) that I could take to prevent the reactions.

6

If you do decide to go back to MDI, you might want to look further than NPH. I don't know which insulins you have tried, but I have found Levemir to keep me quite stable with two injections a day, one when I wake, one in late evening. I did a full day fast (for colonoscopy prep) and watched my BG carefully - I was pleased to see that the Levemir kept me very stable with only minor corrections needed over the 36 hours I wasn't eating or bolusing. Light years better than the old days with NPH.

7

I was on MDI using Lantus and Humalog for a couple of years before going on the pump. My big problem with MDI is that I need a variable basal rate - it goes up a lot between 3:00 - 10:00 AM and then again in the evening. On Lantus my blood sugars were crazy with highs and lows even if I didn't eat anything for most of the day. Lantus did not last 24 hours for me so I took two shots a day, morning and evening. Levemir might be better, but from what I read it's still a flat profile. I was thinking of MDI with Lantus/Levemir but then using NPH to get the additional basal insulin I would need during the early morning and early evening. Before the pump, the only way I was able to wake up with anywhere near normal BG was by getting up at 3:00 AM and taking 2-3 units of Humalog. There is no way I'd be willing to do that again! I had other issues throughout the day with a flat basal insulin ... I couldn't skip lunch without going low on Lantus. I struggled with extreme after-dinner highs, although that improved significantly after splitting the Lantus into two doses. I had to have a small bedtime snack before bed in order to not go low in the middle of the night. But the dawn phenomenon was my biggest issue. Not to mention the very fast changes that happened each month due to hormones (my dose can change by literally 10 units up or down over a period of 24 hours!). I didn't go on the pump for convenience, I went on it for the variable basal rates. The pump trainer I had said I was the first person she had heard state "better control" and not "more convenient" as the reason for going on the pump. The pump worked fantastically for about two years - A1cs in the upper 6s for the first and only time in my life - but that obviously didn't last.

8

Do you take Zyrtec or Claritin every day? My eczema is loads better when I do, and I think I stopped reacting to Band-Aids (mild, extremely annoying flare-ups directly under the adhesive) when I started taking Zyrtec consistently. I'm sorry I can't help with anything localized, but if you regularly take an antihistamine it might help overall. On the plus side, I also found that I have less airborne reactions to my food allergies when I take Zyrtec all the time--that alone is a good enough reason for me!

9

Sadly, I already take 10 mg of Reactine (Canadian brand for Zyrtec) every day year-round. :( When I try to stop, I am completely miserable during winter and literally non-functional during the other three seasons. I definitely feel like my infusion sets are calmer when my allergies overall are under good control. Right now, considering it's winter and I'm already taking a daily allergy medication, my allergies aren't great. I'm still reacting fairly strongly to things I'm allergic to when I'm near - but not touching - them (dogs, dust in the past week). And judging how utterly horrible last year was, things are going to get much, much worse in another month or two ...

10

Jen, I know it's a major PITA, but have you considered taking a break from the pump and going back to MDI for a period purely for the purpose of confirming that your control issues are indeed pump/set/site/allergy issues?

Given the chronic nature of this problem you're having, it seems to me it would be a good idea to make sure something else isn't going on that maybe has nothing at all to do with insulin administration method.

Indeed, if it's something else, it may be serious.

Just a thought!

11

Oh, another "experiment" I thought you might try -- although not cheap :-( -- is to put in a second set not connected, and see how long you go before it starts getting irritated.

This would help determine if the physiological reaction is to the set and/or its adhesives, or to the constant introduction of insulin into tissue. The MDI experiment also gives some insight in to this, but it's more indirect.

And, I want to extend my strong sympathy to you on this -- you're one of the people here I've gotten to "know" better than most, I've followed your saga on this, and it pains me to see you go through it. Lean on your friends local and virtual, baby!

12

Another one for you, Jen... Re: SkinTac. Have you tried tegaderm? The stuff is famously hypoallergenic, and if you've every worn a NexCare waterproof bandage, you've used it. I put those little bandages on small blemishes that are tough to heal with a little neosporin (cream, not ointment), and have completely forgotten it was there for weeks if it wasn't in a visible locale.

Get some 3x3" tegaderm patches, and try one as a skin barrier (i.e. put the patch on first, and the set over the top). That way, the only adhesive in contact with your skin is the hypoallergenic tegaderm adhesive. The set should stick pretty well to the tegaderm rubbery film, and stay on securely.

Indeed, I have a whole box of the stuff I bought when I was first starting out with pump and CGM, and found I really didn't need it. I'd be happy to send you a handful of them to try out, gratis. Message me...

13

Re: DP

Maybe some metformin to supplement the insulin might be something to talk with your endo about?

You could take it just in the evening, to help suppress the DP sugars. Take it right before bed.

Met is so associated with T2 that it often gets overlooked for T1's having control issues like you are. However, it's just a drug, and a really good, well-tolerated one too. It may be just the extra little oomph you need to make it through the night on an MDI pump vacation, so you're dealing with the sugar release (which will come regardless, make no mistake!) when you're awake.

My DP is worst when I eat too much late at night.

Go figure.

14
I had itching too in my bladder, talk about hell.
Indeed, shots... getting at, and scratching that one must be quite an ordeal
15

I actually took a short (week-long) pump vacation about two summers ago because I was so tired of the whole infusion set issue. I'd intended to stay off the pump longer, but my control was so bad I couldn't stand it. I don't think I'll bring it up at this appointment (I need to update my endocrinologist about all the things I've tried so far, since it's been about six months since I saw him), but at the appointment after that, if this is still going on, I will definitely bring it up.

Though—especially after these past three months or so of no site reactions and great control—I'm pretty sure it's a pumping issue. If I could find a way to make MDI as precise and responsive as the pump I wouldn't be so hesitant to do it.

I'm also interested in using a CGM (I think that, too, would improve my control greatly), but I feel like I need to get this infusion set stuff sorted out before I launch into putting other devices and adhesives on my skin.

16

YES!!!

Jen, I just couldn't do it without a CGM. My control would be abhorrent.

17

Thanks for the offer. I have actually tried Tegaderm under my sets and found that it helped a bit, but I still got irritation right at the insertion site as well as itching and redness all around the outside of the dressing. Usually I was just as desperate to remove the site with the Tegaderm as I was without it. I did read that there is a hypoallergenic form of Tegaderm - I just tried the regular one. (I don't take much faith in hypoallergenic, though - Skin Tac says right on the box that it's hypoallergenic, yet I get much itchier and irritated with it compared to without). I'm hoping that my endocrinologist can hook me up with a pump trainer who can get me samples of various films and wipes to try to see if anything works.

18

I did this about six months ago with Comfort infusion sets when I was trying to figure out if I was allergic to the adhesive or the cannula. When I stuck it on my skin without inserting, I got no irritation at all other than a little red welt right where the cannula itself lay against my skin. That's what convinced me that my main problem was the cannula itself. With these metal sets I think it's the same - I think I'm reacting to the metal under my skin, and not just the adhesive. Up until now my reactions to the metal sets haven't been too bad, but my allergies in general lately have been acting up, including my reactions to jewellry (I wore earrings the other week that made a rash all down my neck where they had touched). I definitely think my sites get more irritated when my allergies in general are bad. I think I need my immune system in general to calm down!!

19

This is a good idea. I didn't know metformin could help with DP, but if it does, I will definitely ask my endocrinologist about it if it comes to taking a pump vacation ...

20

The Dexcom was just recently released here in Canada. I got all excited (well, aside from this allergy stuff) until I found the cost. I'll probably have to pay for it myself as provincial health care doesn't cover it and I'd be surprised if my health benefits through work do. I'm not sure I can afford $800 for the receiver plus $700 every 6-9 months for the transmitter plus $85 a week (assuming here I won't be able to stretch a sensor out) ... that's over $5,000 a year!

I still think I'll get one, though, even just as a tool to wear intermittently for troubleshooting (my endocrinologist suggested I use it this way if I can't get it covered).