Allergic to Insulin

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Allergic to Insulin

Are you plagued by itchy welts where you inject or infuse insulin? Have any other odd symptoms which may be allergy related? Share your frustrations and success in managing this allergy here.

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allergic to insulin

Started by alice Sep 23, 2013. 0 Replies

Hi,I am so sorry to hear you are having this reaction.I appear to be allergic to 3 kinds of quick acting insulin (humalog - has latex, Adipra, and Novolog which are latex free).I don't know if it's…Continue

Tags: reaction, insulin

Insulin allergy

Started by caitlyngrisham Mar 5, 2013. 0 Replies

For the past 6 months, I've been having some terrible issues with my insulin. My sites have been getting red, swollen, hot to the touch and infected. They stay red even after I remove the site from…Continue

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Comment by cherie on December 23, 2013 at 11:56am

I have recently found out what is wrong well have a name at least, now I have to have all the tests http://dermnetnz.org/reactions/sjs-ten.html so get your doctor to look for this, It took me to move to Melbourne to find an awesome docotr.

Comment by Diane McDowell on November 10, 2013 at 11:16am

It has been a while since I originally asked for help here. The people who posted gave various experiences and advice. I was able to try a few, and keep testing with my endo to find out which combination of sensor/adhesive/insulin would cause the least amount of reaction for me.

so here are my results so far...I react to all of the sensors and all of the adhesives (except of course the G4 cgm which has never cause a problem...)

So this led us to believe that the source of the reaction was indeed the insulin itself. Went through Novolog, humalog, and apidra. Still same horrid reactions.

then I noticed that benadryl nights (since I can only take it at nights) had lower BGs and less swelling and redness in the AM...I had never used Zyrtec, and didnt want to try it but I did, after a few consecutive days of zyrtec in the day and benadryl at night (better because it helps me sleep) I had no redness, no itching no welt, and no bump. I change inset, any one of the three I have left in my test box at three days.

I have done several re-tests. with injections for bolus...the inj site has a tiny bee sting reaction but the inserts look horrid again and the huge hard bumps ar knots as hard as bone without an antihistamine.

So final analysis, I stay on antihistamines forever I guess, I swap out inserts more frequently, and I change up the brand of the insert because anything that adds to the insulin allergy starts the skin reacting also...Even though the beautiful Dexcom G$ sites have never had one problem...

Anyway, I thank everyone who shares here. Their time and experience was so helpful. Blessings Diane

Comment by alice on October 11, 2013 at 1:56pm

Hi Kent and Gail,

Some news - I had the skin allergy testing done with the 3 insulins and the Lantus that I reacted to, and one insulin, new for me. I didn't react to any of them. Dr Akin said he wasn't surprised, and feels I had an idiopathic anaphylactic reaction - essentially a freak, random reaction. (Dr Cem Akin is one of the few Mast Cell Researchers, and is at Brigham's and Women's in Boston)(I live 2 hours away in Western Mass)

Kent - can I ask why you had a biopsy at the infusion site? And I find it interesting that your insulin works better with large doses of antihistamine. I had noticed the same thing. Am I correct when I say that you had no reaction on the skin surface, but had only a deep tissue biopsy where you had your pump showed Mast Cell involvement? I do sweat and have episodes of unexplained hypertension, and with a reaction to one type of insulin I had some really weird episodes of shortness on breath. I didn't even feel it until I tried to talk, and I couldn't get enough air in my lungs to speak, but seemed fine when I didn't talk - (maybe a message here - hehehe. I have a test for pheochromocytoma pending. I have tested negative for this before, but I have 2 cousins who do have this. I also have occasional right sided chest pains, that are accompanied with abnormal EKG changes - S-T interval changes, which mysteriously goes away after a day or two, and the cardiologists scratch their heads. Extensive cardiac tests show my heart is 100% -no heart weakness or damage at all!! I occasionally get unexplained muscle weakness that comes and goes, but no fainting, nor pulmonary hypertension - that I know of. I do have edema in my wrists and legs.

What do your docs think is going on? Mast Cell Disease - but deep down? or something else or both? I would like to bounce your story off Dr Akin, with your permission? I'll let you know what her thinks. Where do you live?

Dr Akin mentioned Kounis Syndrome (allergic angina, coronary artery spasm due to mast cells releasing histamine there) Dr Akin is good friends with Dr Kounis, but doesn't subscribe to Dr Kounisis' theory. I tend to side with Dr Kounis. Unfortunately, Dr Kounis lives in Greece.

With the negative skin tests, I am told to restart the Lantus injections, and next week we'll re-evaluate and start a short acting insulin. Gail, I haven't been taking any short acting insulin for the past few weeks, and my sugars have been all over - 298 - 493, trying to not eat ANY carbs at all, and drinking lots of water. I didn't have a pump. I reacted the quickest to Apidra. The Endochrinologist mentioned possibly going on a pump. I am hoping I don't react again, and wind up back in the hospital. It wasn't pleasant to go thru that reaction! :-(

Thanks to both of you and to all the the folks in the group that answered my plea for help and info. I'll see what happens next and keep you all posted.

Comment by kent on October 10, 2013 at 10:29am

alice,
That is so interesting. Insulin doesn't work in my body without bunches of antihistamines. I also am plagued with mast cells that act oddly. A biopsy of one of my infusion sites showed inflammation and mast cells deep in the tissue, but a skin test with insulin on the surface of my skin showed no reaction. I take large doses of allerest and my insulin works much better. The docs for the most part don't believe it because "you can't be alergic to insulin". Fortunately, I have an internist and an allergist who are seriously searching for an explanation. Other symptoms include pulmonary hypertension, systemic edema, chest pains, shortness of breath, muscle weakness, etc, etc. I have episodes of sweating, and very high blood pressure, fainting that self correct after a few minutes or an hour. I had a test for pheochromocytoma which was negative.

I am going to provide this info to my medical team. Thank you very much.

Comment by Gail N. on October 10, 2013 at 8:18am

Hi;
Alice; that is so interesting about the mast cell. I am allergic to all insulins and most meds like most of us; I take Apidra on medtronic pump but don;t feel well still as I have written about in detail before. Alice what insulin are you able to tolerate? Do you take shots or use a pump? I'm thinking of switching to Omnipod since there is no tubing. My insurance won;t pay but Iill have to pay out of pocket; I always felt tubing makes affects me adversely no rashes just the way I feel better with less any product that touches my body of insulin haveing to travel thru tubing. Who knows with mei react to everything; also all antibiotics everything docs of course never see this so they have a hard time believing; I take Benadry and Valium to sleep insulin keeps me up and gives dreams. Alice; what is your protocol with insulin?

Comment by alice on September 23, 2013 at 9:09pm

Hi,

I'm new here, but all of you seem to have a lot of allergies. Maybe you might have a form of mast cell disease.

I have been diagnosed with a form of mast cell disease called mast cell activation disorder (MCAD) by a specialist in Boston - at Brigham and Women's. He was one of the docs from around the world that described this new disorder. It is a variant of mastocytosis, but is not cancerous. It is described as normal (not cancerous) mast cells behaving badly. That means they are constantly in a state of breaking apart (degranulating) and are constantly releasing histamine and some other chemicals. This makes me allergic to many meds. I also have been allergic to latex for 30 years too.

The treatment for MCAD is antihistamines - I take benedryl and zyrtec daily, as well as zantac (ranitidine). The benedryl and Zyrtec are Histamine 1 inhibitors and the zantac is an Histamine 2 inhibitor and acts on the gut. I also have oral liquid gastocrom (chromyln sodium) that is a mast cell stabilizer. When I am having a reaction, I take a huge dose of benedryl 225 mg, and if that doesn't work, I move onto prednisone 20 mg at a time. I actually just got out of the hospital after a reaction to my 3rd type of insulin. My Mast Cells have decided to hang out in my coronary rtery, where they persistently release histamine, which makes my coronary artery go into spasm, and it appears that I am having a heart attack, but then suddenly with the massive antihistamine dose and IV steroids, everything returns to normal, and the Drs scratch their heads. I've been totally worked up for cardiac disease, and my heart is 100 % - so there is not heart attack, no heart damage, just an abnormal EKG that turns normal with the antihistamines.

MCAD is a "temporary" acquired form of mastocytosis. Systemic mastocytosis can become cancerous, and can be passed down genetically. Most dostors have never seen a patient with either Mastocytosis or MCAD. The heard of it in med school, but never really had a patient with it, so they don't usually see it and diagnose it. But it might be wiorth mentioning it to you doc.

There is a web site for mastocytosis - tmsforacure.org for people with mastocytosis and MCAD. There you can find out the symptoms, how it is diagnosed, and talk to people with it.

Just a thought since we are all so allergic to so many things.

Alice in Mass

Comment by mollyjade on August 7, 2013 at 6:31pm

There are a few products out there that you can apply before putting on your pump site. IV Prep, Skin Tac, Skin Prep. You should be able to order one from wherever you get your pumping supplies. They're not very expensive.

I used to use IV prep to help my sites stay on longer until I developed an allergy to it.

Comment by Diane McDowell on August 7, 2013 at 10:12am

Hi Kent was off line for a day or so..I have been asking people which skin preps...I haven't had anyone answer yet..I don't want to spend money on trials and error... BTW my test that Mollyjade suggested, was just as I suspected...Sever adhesive allergy to one with no insulin..second with no insulin no allergy..third using insulin bump and pain and a wee bit of redness and itching pain and replaced already..Thank God for Zyrtec and Benadryl

Comment by Gail N. on August 6, 2013 at 3:42pm

Hi i'm Gail-haven't been here for a long time- have just been reading the latest stories of allergies to insulin. I seen to be allergic to all insulin -used to take pork nph AND REG -tolerated it but never felt well or right on it for 25 yrs. long long story short- had to go on an analog or die; Went on Apidra on shots at first- was desensitized still felt weird on it to this day- 4and 1/2 yrs later. Apidra keeps ne up all night- take Benadryl to try to get sleep but wake up every hour or so with such weird dreams whenever I finally fall asleep. Used to have hives but only insummer and not at sites hives have not appeared for the last year or so. Am on Medtronic pump for past 4 yrs. Physicians do not have a clue about people who cannot tolerate insulins/ Most of us have to find sone way to cope. Allergist; endos i've seen them all. Great endo who believes me sensitivities to most meds but doesn't know how to advise. I feel better now on insulin but dont get sleep because of it. Very strange. Have tried all others- worse for me with them.I DO REACT terribly to most meds- just an overreactive type of system. I try to take many supplements some of which help my system in general i feel.

Comment by kent on August 6, 2013 at 6:57am

Diane,
Do you use SkinPrep or the like before you insert your sets? The film it lays down on the skin should protect from direct contact with the adhesive I think.

I'm in beautiful Helena, Montana.

 

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