Has Anyone Had This Reaction To Insulin?

General
1

Hi out there in the big wide world.

My 12 year old daughter, Sydney, was diagnose Type 1 in June. If that wasn't bad enough, she has been suffering from reactions to the insulin from the very beginning.

It started in the hospital with Protafane. Just a small reaction, redness and a bit of discomfort. They said "No problem, we'll just change to Humulin" which we did. From there it got worse. The discomfort became pain and the redness became a large area. So again they decided to try a switch to Lantis...this was worse so back to Humulin we went. They then decided to try the unfunded, but last, Detemir....No good either. That was all 4 long lasting insulins we have here in New Zealand.

Ok, they said....we'll just put her on a pump. Because to that point the short acting insulin was fine. However, 3 weeks ago, that changed. She has been on Novorapid from the beginning but now it is having quite a bad reaction, huge pain, lots of redness and a welt. And in some cases, bigger doses, it splits the skin. Her poor tummy is so sore and covered in red marks and scabs. We have since tried Actrapid (BAD) Humulog (super BAD) and tomorrow we are going to be the first in our city to try Apidra, it was only released here at the beginning of this month.

I can't tell you how frustrating it is when your child is in pain and you know you have to do it to them again. All the doctors are scratching theirs heads because they have never come across this here.

Sydney has handled the whole diabetes things really really well to this point. It is going a little pear shaped now however. She just doesn't want to do it anymore.

Has anyone out there had this happen??

J9

2

This sounds like a classic case of insulin allergy.  It's extremely uncommon, but there are some treatments.  Do a google search for "insulin allergy" and you'll find a bunch of medical journal articles that you can share with your daughter's doctor.  Hope some of the treatments are able to help her. 

3

Hope a solution is found quickly for Sydney.  That experience really does sound awful.

4

Well....we tried the apidra....No success there either.

As it stands at the moment the doctors are planning on putting her back in hospital next week and doing a desensitization process with an I.V line and a pump.

Anyone been through this??

5

Wow that sounds awful.My daughter was diagnosed in May and we haven't had any big difficulties. One wonders if this reaction she is having might be the actual cause of her diabetes in the first place. An allergic reaction to insulin.

I can tell you that Lantus is very painful for my daughter but now her dose is only 3 units down from 13 and it doesn't bother her at this low dose. It leaves her bruised. When her honeymoon is over we will switch to a pump and be done with it.

Is it possible she is allergic to the needles? There is nickel in stainless steel. Nickel is what makes it corrosion resistant.

 

6

It gets more frustrating by the day. They are now talking about sending us to auckland (3 hour flight) to do allergy testing. They are thinking it is the zinc that is in ALL insulins.

They were going to desensitize her but no rep's from the pumps companies are able to be her for 2 weeks because of some conference in Australia. And to top it all off our support nurse (of which there is only one) is away from tonight on holiday for two weeks!!

My poor wee girl is covered in scab's from every injection and is so much pain. It is just awful!! This was this morning.

7

That looks awful! 

I read a blog by a woman who is type one and has an allergy to insulin. she pump in a mix of short acting insulin and a steroid, and it works for her. that might be something to look into. 

if you're interested in the blog, it is damdiabetes.blogspot.com

good luck. that sure looks and sounds frustrating. 

8

That looks awful. :(


I hope everything works out for you guys!

9

Does zinc oxide, a common sun screen do that to her? The thick opaque sunscreens are mostly zinc oxide. 

10

As a mom of a t-1 I am so sorry she has that reaction to insulin. Her pic brings tears to my eyes> I hope they figure out something and fast for her.

11

Hello Janine, I know two ladies who have an allergic reaction to insulins. They have been through the desensitization procedure and are doing much better now. One of them lives in Melbourne. She is now pregnant with her third child.

I am going to show her this discussion with a private message. She posts on two American sites. She may come here to talk to you.

Good luck to you and your daughter!!

-Richard

12

Janine,

You can also send me a message if you'd like. I've gotten welts and hives from my injections forever. (For me, they start out as a red itchy bump, the redness spreads, and then they become a hard painful welt that lasts for a couple of days.) It's caused a lot of tissue build up in my skin, so my arms, legs, & butt look "lumpy." I've seen numerous allergists. *Some* people do better on different insulin types, but, like your daughter, I have the same reaction to every type too. What I've learned from seeing three allergists is:

1. Some insulin companies will send your doctor their solution of additives that they add to the insulin. I didn't react to it when they tried that for me about 15-20 years ago, so they assume it's the insulin for me.

2. It was also suggested to me to try adding steroids to injections. But, steroids have side effects, esp over the long run. Instead, after injections, I used a numbing cream as a child to help with the pain. You can also ask the endo about using heat or cold on the site after injecting. But, just be aware that the heat increases the absorption rate of the insulin & cold slows it down. This helped me as a child!

3. Because she needs to take insulin often and will be taking bigger doses as she gets older, many doctors told me that this would naturally act as a desensitization process. For me, it really didn't. But, in the last 5 years, it's gotten somewhat better for me. Definitely not worse. If you do try to do a desensitization process, but wary of seeing an allergist alone. Make sure an endo is there or on the phone at the time. An allergist tried to do allergy testing on me about 6 years ago. He didn't understand why I freaked out that he was about to inject a 1/2 unit of 6 different insulins of different peak times into my forearm at once. He said, "Just have a snack after." I insisted he call my endo, and she explained it to him.

4. I would ask about trying an oral anti-allergy drug. An allergist can prescribe a larger dose than is typical. This hasn't solved my problem, but mitigated it slightly.

5. This problem is rare, so I've had endos give me a hard time, like I was making it up, and tell me it's just a reaction to the syringe, or whatever. In fact, people on this site (who aren't doctors) have written that an insulin allergy isn't possible. I just try to act confident and explain it's been diagnosed by an allergist. You know what's going on and that this is a real issue, so ignore them!!

Sorry I don't have better news for you. Hopefully hers will get better on it's own. For me, as long as the insulin is working, I've just dealt with the pain. Also, as she builds more scar tissue, it will likely hurt less. The good news is that mine has been stable, if not getting better, since it started in the mid-80's. My thoughts are with your daughter!  Please let me know if I can help you with anything else.

13

Thank you to everyone who has posted. It means heaps to not feel so alone out there. The Doctors here are being really awesome and doing all they can considering they have never come up against it before. We are a small(ish) country of 4 1/2 million people. So not many in the big scheme of things. There are only around 80 kids in our area who are type 1.

We spent the day in hospital today. To get sydney through the weekend we are only using Humulin, in bigger doses. It means her bloods are running a little higher, up in the mid to late teens (I think we are on a different system than you guys) but it means only 2 injections a day, with maybe one of Novorapid if she gets too high. So she's eating little and often. Not easy when we changed her eating habits when she was diagnoses. 

Monday morning bright and early we are 'checking in' to hospital until it is resolved. They are putting a 'pic' in so they can feed insulin in there. Tuesday they are going to start her on a pump, on the lowest doses possible. With luck it will all work they way they hope. There is talk of steroids. Not my favourite idea but it this point we will try anything.

Keep your fingers crossed for us. If I don't reply....you know where I'll be :o)

Thanks everyone!!

 

14

Good luck. I hope it is resolved quickly. It must be terrifying to have your child go through this. 

 

15

Well.....here we are a week and a half out of hospital. And Sydney is pumping!!! No more pain...no more reactions!!! The desensitizition worked. It was a long slow process but we made it in the end. Turns out there is a preservative that doesn't agree with her. They used a saline solution on her that was made by Lilly (who make Humulin/ humulog) and she reacted to that as well.

She has built her tolarance so she can now do 8 units at once. I know that doesn't sound a lot but she is in her 'honeymoon' period and before hand 1 unit was enough to make her react.

All the Doctors were so interested in her that they are writting papers. From what I gather there hasn't been another case like this in New Zealand.

Way to have a really interesting child.....would rather she had been run of hte mill :o)

All over with now and I hope it remains well.

Thanks to everyone who commented :o) 

16

That is terrible, i feel so bad for her.  What a crappy hand to be dealt.  It must be a total nightmare for her and the whole family.  Best wishes to your doctor or doctors trying to find a solution to this.

 

hang in there

steve

17

@Janine Hooray! Hooray! What an ordeal. I'm so happy to hear that Sydney is doing better. Hopefully the worst is behind you both. :)

18

I don't know how I missed this topic when it was posted, but I am so glad to see there was a happy ending!! I got so sad about it all until I saw the update. I am so happy for you and your daughter and I'm glad her health can stay on track now =)

19

That is good news!