My daughter is Type 1 diabetic since she was 16 now she is almost 20 now. She has been on pump for 3 years and humalog, and out of nowhere she started to have a allergic reaction to her insulin ( humalog) she woke up with hives and throughout the day they got worst so i had her disconnect from her pump and had her give herself long acting insulin ( Levemir) which was at 1:20 p.m. within a hour the hives went away completely. At dinner time 7:00 p.m. we had to bolus and we only had Humalog so we gave her 5 units of humalog and within 2 minutes the hives came back. ( you would think allergic reaction right?) I called the oncall endocrinologist which happened to be her DR she normally sees and explained to her everything that happened… ( well she argued with me that she CAN NOT BE ALLERGIC TO IT!) In the end she did call me in novolog as a precaution…) well we gave 2 units of new insulin with her snack and she went to bed woke up and had hives on her arms and stomach. At 5 a.m. She connected back to her pump with novolog in it and hives got worse. (Again you would think allergic reaction) I took her to her peditrican and they saw what was happening and said disconnet from your pump immediately and they put her on 20mg x 3 pills of prednisone for 5 days. They also switched her to Apidra zinc free insulin thinking maybe it could be the Zinc in the other 2 insulins… (with her disconnecting from her pump within a hour the hives started to go away again) well within 2 hours of her taking the 3rd new insulin Apidra the hives came right back! I called her peditrican again and he said get her to Yale hospital ER right away. I took her to ER and hives were full blown that they said disconnect from pump immediatley. So we did. Within a hour hives went away again! Final outcome at the hospital when they discharged us was they are preplexed and dont know what to do. That the allergist doesn’t think she is allergic to the insulin. Let me just say not once did they check her sugar, urine, or do any blood work in the 7 hours we were there! Her endocrinologist team that follows her didnt even come down to see her! We were so pissed that we said fine just discharge us if there is nothing you could do. They sent us home with same insulin and said to pump her with antihistamines to control the hives! But not to use the pump just to do injections…( are you kidding me) when we got home I check her urine for keytones and she was in the moderate range!
We had our normal 3 month check up that next day with endocrine and what a crap show that was! Her DR said there is no zinc in Humalog and novolog and that in her 25 year’s she has never her of anyone being allergic to insulin. My daughter and I were shocked at what just came out of the DR mouth! We are now looking for new endocrinologist now after that! Im thinking that its not the zinc because there is zinc in Levemir also and she is fine with that. Maybe its the fillers in the insulin she can be allergic to… we need to wait for her to be off the prednisone and antihistamines for a week before we can go to a allergist.
Can anyone please give advice as to why my daughter is having allergic reactions to all fast acting insulins via pump and injections over her entire body.?
Thanks Jeannette
So sorry to hear about the allergy situation. However, if it’s available where you are, there is another (very) fast acting insulin which likely has less allergic potential… inhaled Afrezza. If nothing else is working, it probably would.
Ya thats what the plan is once she is off prednisone and the antihistamines for 7 days. But how can she get off of the meds if the rash is this bad… this is the 4th day with the hives now.
Insulin allergy is very rare. I would try to get in to see an allergist who has experience with insulin allergy. Allergies can be really complex and hard to untangle, and they are not always obvious or straightforward. But an allergist can perform testing to determine exactly what is causing the reaction.
In looking at the ingredients in Humalog, Novolog, Apidra, and Levemir, Humalog and Levemir both contain zinc, so I wouldn’t think the reaction is to that. Humalog and Apidra only share one ingredient, metacresol, but this ingredient is also present in Levemir. Has she tried regular insulin to see if that causes problems?
I would also be looking at (and keeping notes on) other things beyond the ingredients of insulin. Are you always using the same needles or pens? Could it be a reaction to the material the vial stopper is made from? Could it be a reaction to something in the pump infusion sets or the needles (or pen needles) used for injection? Could it be something environmental that just happens to correspond with boluses (such as a food allergy)? Is she allergic to any other things? Sometimes the body can become overwhelmed with allergies and react to things it’s not really allergic to. And sometimes hives have non-allergic causes. An allergist would be able to help sort all this out, but keeping some detailed records about the circumstances around each reaction would help a lot.
I have read about people with insulin allergies successfully being desensitized by an allergist. I’ve also read about people successfully using pumps by using extended boluses or by mixing steroids with the insulin in the pump. So there are solutions, but i think it would require a clear diagnosis and close collaboration between an allergist and endocrinologist.
Good luck sorting all this out. I’m not allergic to insulin but I do have complicated allergy issues.
The reason they want you off prednisone and antihistamiens is so they can perform allergy skin testing. Prednison and antihistamines will cause false negative results. There are also blood tests available (for IgE antibodies to allergens) that don’t require someone be off these medications. I’m not sure if they have a blood test available for insulin, but it might be worth asking about if your daughter is still reacting too much to stop taking them.
She does have food allergies but she stays away from them. She also has environmental allergies and takes treatment for that. And she also is allergic to Bactrim antibiotics and that whole family line and we just found that out at the end of february. She is a hot mess! It feels like diabetes is bringing out so much more now…
Just early last month she ended up w site infection. Took meds and then more meds due to 2 UTI’s in 1 month. We see urologist on april 25 for that. We havent change any brands with supplies for the pump. Nor have we changed anything in our house…
I cant wait to go to the allergist to find out whats going on…
Unfortunately, allergies can develop at any time, even to things you’ve used for years without problems.
I really feel for your daughter. Sounds a lot like me. Food allergies, environmental allergies, seasonal allergies, several other allergic conditions, allergies that interfere with diabetes (in my case I’m allergic to many infusion sets and tapes). It gets so complicated when these things start to overlap.
Hopefully you can get in to see an allergist soon.
Another consideration is autoimmune related, uticaria. I didn’t know when I was “suffering” from them that they were autoimmune. I just knew I was getting hives over 90% of my body. I went to doctor upon doctor and even traveled 500 miles to a specialist who thought they could help. They are in Cleveland I believe and I was on the bordering state Pennsylvania. They went away on their own basically. I found I could hold them at bay by limiting certain aspects. Soaking more in cool to tepid (not hot) oatmeal baths; tempering my stress level; taking atarax (5mg to 25 mg depending on how severe the itch was and what I had yet to do for the day.)
THe 5mg would allow me to work, slowly, while the hives every so slowly went away. If they couldn’t, I took the higher dose and slept my way through.
Also, I would get shots of Benadry in the ER; they helped, but something else later on prompted the hives to return. This went on for several years.
Today I still get Uticaria (hives that last for months on end) but are small in comparison to the past years and they don’t last as long.
You might want to look into what others have mentioned, latex allergies, rubber allergy, but too this “new to many, but not new to being known as an autoimmune disease” … uticaria.
Anyway, it’s just a thought to consider, it might not be the insulin (I have heard of it though) but it could be something idiopathic (unknown reason).
Im sorry to here that she has been going through that. I completely feel for her… How long has she been on pump? Im going to have my daughter tested for celiac disease, since not only does it seem to happen with the insulin when she doesn’t eat but even when she’s eating it seems to get worst not sure if it’s since she is getting more insulin to cover the carbs or is it because of the gluten… Plus celiac runs in my family as well.
