Miss Margie thank you for your comment but my sinuses are not involved.
Yes I am seeing a Board certified allergist.
Since diagnosis (1995) i have felt a burning sensation with injections (ones larger than around 8 unitsā¦ felt like injecting lava) always figured it was due to thin skin or something. Then a few years ago i developed a chronic cough overnight. (Thought it was a permanent effect of pneumonia. I also have severe bone pain and joint pain but all tests were normal. Pain relievers were not helping at allā¦ even the strongest ones in the hospital. About 2 years ago I got a strange lump in my breast. Then this year my cortsol levels went up and I got more lumps in my armpit and breast. No doctor could explain it. They said it was benign. Then I got a lump in my palm (same sideā¦ also side i wear my insulin pump on) the lump grew to fill about half of my hand. I went to my rheumatologist and she took one look at my hand and told me it was an allergy. She instructed me to take zyrtec/zantac combo for a few days.
I was baffled. I extremely habitual. No change kinda person. What was I allergic to? All of a sudden I woke in the middle of the night and my entire face was puffyā¦ eyes swollen etcā¦ and my blood sugar was slightly low. I thought i was imagining the swelling so I treated the low and the swelling slowly went down. My husband saw it so it wasnāt imagined. The next day I had angioedema immediately after taking insulin and a rash. (And forgot to mention I was off the pump due to severe hives that had appeared constantly 2 months prior until thenā¦ I was waiting for pump company to send other tapes because I believed it was a tape allergyā¦ turns out it wasnāt) the next day I had breathing issues after taking the insulin and a giant purple red bruise looking rash all over my leg. I called my endo and told her I think I might be allergic to insulin or something and went to ER because my stomach started swelling and I went from a size 4 to looking about to pop a baby out. Dr said I was constipated. Then I went back a few hours later and they tested some other insulins while talking with my endo (endo is about an hour away). Each insulin I was having reactions to. So I was out on steroids to force me to accept the insulin.
This all happened end of November/ beginning of December. It was hell. My doctors were all out of town. Many out of the country. I was stuck fending for myself and my life with only the crappy unknowing ER with a small town mentality that doesnāt even acknowledge things like this exist. Had full blown anaphylaxis on Christmasā¦ but I was told didnāt have itā¦ I freaking couldnāt breath and I blacked out. Because my blood pressure didnāt drop? But I have CKD my blood pressure is high and during anaphylaxis my bp was normalā¦ Regardless the epi pen resolved the issue.
Anyway currently had several hospital stays since. 2 in icu. Have had adverse reactions to every insulin I have tried. Tried CSII and MDI techniques. In the hospital they did regular insulin intravenous and I even have reactions (delayed surprisingly) to that. My arm is purple and red from the intravenous delivery. Additionally my arm on the side I used to wear my pump on (wore infusion on stomach) has issues with using it. I have trouble lifting and using this arm. Then all of a sudden I started feeling a swarm of bees or something feeling like it was swimming in my arm and made it extremely difficult to use my arm. It is a daily battle dealing with that arm nowā¦it still hasnāt gone away and sometimes it feels like my arm is being ripped off by wolves or something. Steroids had helped force my body to accept insulin and it helps keep the arm thing controlled. But I hate being on steroidsā¦ It causes serious insulin resistance. Iām trying to step off it. Hospital got me started on the pump with apidra and Iām allergic to that too. It actually caused pretty bad burning brain symptoms too. Humalog was worse though. Humalog caused me horrendous burning brain symptoms. I took humalog for the longest time. I think my body just canāt handle humalog anymore. I was having to switch up insulins every few days due to these constant reactions. But I have very severe reactions to humalog instantly now so it isnāt even worth it to use humulog at allā¦ which sucks because I have a lot in the fridge.
Life has been literal Heāll. From everything going on I was barely eating due to loss of appetite and insulin resistance caused by prednisone so my legs atrophied or something. I canāt stand up from sitting on the ground. My feet occasionally look like Jabba the Hutās tail. I have moon face. And Iām having serious problems walking up stairs, lifting things, opening things and I get tired doing simple tasks now. (I am a strong gym 5 day a week girl. This is very abnormal for me) I call this stupid condition Jabba the Hulk Because thatās how I feel I look when everything acts up. Lol! So thatās where Iām at with this in February. Iām hoping someone somewhere has some good advise. I feel like Iām living in Hell. I have a 19 month old son I feel like Iām failing. Iām supposedly going to go through desensitization. However, my IGE test I think was normal. So Iām wondering about that. Everyone suspected systemic insulin allergy possibly molecular or something but then wouldnāt that test be positive? Is it possible this is just HAT?
I meant to post this to the whole boardā¦ sorry
Iām so sorry. āAbsolute hellā sounds like an understatement to the situation where your body is rejecting the insulin you need to survive. How awful.
It sounds like youāve tried a LOT of different types of insulins. Have you exhausted the list of whatās available? I seem to remember someone in the DOC who was using animal insulins for a similar reason - this was years ago, and I think itās hard to find, but maybe worth investigating?
I tried quite a few. I think they put me on several with different preservatives. Some people swear by animal insulin. My endo is very against it for me. But I have some very severe medical conditions (autoimmune) in my family and my family also had very bad allergy issues. So, I think my endo doesnāt want to potentially stress my immune system more.
However, I have some good news. Endo called yesterday and is adding a type 2 med that will make me urinate some sugar out. The goal is to have me take less insulin (less allergy). So weāll see how that goes. Additionally, I was reading that hundreds of years ago aspirin was used to treat type 2 and had similar effects to metformin. It was used on type 1ās as well and it extended their lives. Anyway, there are some theories on the immune system reset using baby aspirin. I have been doing that for about 2 weeks. Iāve noticed positive changes. My reactions are still there but not as debilitating. Purple/red rash lightened up a lot. So, Iām keeping my fingers crossed.
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Mine are crossed as well! His is interesting about the baby aspirin. I havenāt heard this before.
I kinda fell off the planet for a bit. Alright well back thenā¦ I actually found the 4 baby aspirin on the morning and 4 baby aspirin at night to not only lower blood sugar but also it cancelled out some of the negative Cushingās syndrome type effects from being on 80mg prednisone. However several months later I started pooping blood. Lol. But out of desperation to not have my blood sugar constantly in the 500+ range it worked at I survivedā¦ with some severe PTSD. So after that I was put on Jardiance as an experiment and my Jabba the Hut looking feet looked better than they did in yearsā¦ (I was never able to be on diuretics because I am allergic to Sulfa and the sulfa diuretics made me vomit for literally 40 days and the nephrologist never tried another oneā¦) anyway my feet were getting both inflammation and water retention. Jardiance brought that down. Then I got switched to invokana for 1 month and my feet looked the worst Iāve ever seen them and my toenails fell off. Then I got switched back to Jardiance after pretty much begging for it. I tapered from prednisone and then was instructed to instead taper from antihistamines so I could go through humalog desensitization. Tapering from antihistamines was torture. I literally felt like my lungs were being stabbed constantly. So after years upon years of being anti marijuana I started using CBS oils and then the blend of cbd/thc to get off the antihistamines and make it to desensitization. Which basically worked for 3 or 4 days and then my body still could not handle insulin. Eventually I realized that the long acting reactions werenāt as severe as the fast acting reactions so I started surviving by eating extremely low carb (often fasting mimicking diet influences) and slightly overdosing long acting with high dose antihistamines. I also doubled up on blood pressure meds and continued to research. I read all about extended survival techniques from hundreds of years ago for type ones and I read about the gut. Also around this time (May 2018) I started to not be able to swallow (gag) or throw up gluten. I also started having excruciating cramps when I ate gluten. So I got acidophilus and some really good probiotics and doubled up on those for a month. (Until this point I had been crawling and losing muscle massā¦ I definitely was not absorbing nutrients properly) after finishing the probiotics my urine changed. I was finally peeing out the extra vitaminsā¦ where before my urine was clear but I was not absorbing anything properly and I was constantly exhausted. I also used coconut oil and olive oil to help heal the gut. After about 5 months off gluten I lost about 30 pounds of weight I havenāt been able to lose for years but tests for celiac were negative (likely due to being off it for 5 months). In 2018 I took more than 70 epinephrine injections from this insulin hypersensitivity. So here is where Iām at nowā¦
Iām on gluten again. In a week Iām about to have an endoscopy to my intestines. They are looking for celiac, gastroparesis, a pancreatic digestive enzyme disorder, and a few other things.
Here is what I think happenedā¦ I think my intestines are damaged and something similar to a leaky gut syndrome type thing happened. The particles stressed my immune system into basically attacking everything. After my round of probiotics my kidneysā¦ that were basically just about stage 4 kidney disease reverted back to barely needing any attention. And I donāt need any blood pressure meds nowā¦ Iām just on lisinopryl to protect the kidneysā¦ and Iām on a half dose because everything makes my blood pressure low and me dizzy. Plus the lower blood pressure makes me still react even faster to insulin. My insulin needs have greatly diminished. In fact, I have at times had to go several days without insulin due to lows. Particularly when I engage in the fasting mimicking diet. Currently Iām eating gluten to stress thingsā¦ my blood sugar is very difficult to control on gluten and I seem to have frequent lows that donāt resolve for several hoursā¦ which is exhausting. I found out Iām allergic to thiazide. Which probably explains that horrible fever I got after my vaccinations in 2018 just before the insulin hypersensitivity appeared. Also during the time my entire spine got degenerative disk disease. There are lots of other things that happened. I donāt know if anyone is interested. If you are just ask and Iāll be happy to answer. Starting to feel human again.
Wow, sounds like you have been through a lot and Iām glad you are starting to feel human again!
Are they going to check for eosinophilic esophagitis when they do the endoscopy? Itās an allergic disorder thatās closely linked with all the other types of allergic disorders out there, and wheat is one of the top triggers (along with diary). It causes difficulty swallowing, throat swelling, stomach upset, acid reflux type symptoms, among others.
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I canāt remember all the names of the tests but Iāll definitely mention that. Iāve also been getting Xolair injections. It helped me taper off of 80mg prednisone daily and maxing out daily on antihistamines. I also 100% think it prevented additional autoimmune diseases. Most people got an additional autoimmune disease within 4-6 months after having insulin hypersensitivity/allergy. Most get RA. My fingertips were hurting bad, swollen and bright red but it calmed and now theyāre fine. So I think it definitely prevented or delayed additional disease. Anyway thanks for the test suggestion.
Yes, I am allergic to all insulins, not the preservatives. No Doctor has an answer. Going to MD Anderson next. It is systemic. Typically the solution is to put you on a pump and desensitize you but Iāve been on a pump since 1984. I have anaphylaxis with Novolog. Taking Humalog because itās the least symptomatic. But my face swells and joint pain is horrendous. Iāve had ever test that can be done but no solutions. Itās believed that if I could get on pork insulin that it might work but thatās no longer available and hasnāt been in years. I wish you all the best. All our bodies are different. But I believe this is more prevalent than most know.
Hi! So I donāt have any GI issues diagnosed yet. I need to schedule a gastroparesis test but thatās the last thing to check out. I was desensitized to humalog but O think it was done incorrectly. They ate supposed to lower the insulin when there are complaints of pain and that definitely did not happen. They told me in the hospital that the extreme pain and swelling was not allergy but was instead the iv leaking into the arm instead of the vein. It was the worst pain imaginable (I was crying) and then they threatened to disconnect it and send me home because if they had to do anything else it meant the desensitization failed. So I stuck it out and 4 days out of the hospital it failed and I had anaphylaxis again. Iām wondering if I could do it from home (I have 2 pumps) in hospital they used iv r and pump humalog. Anyway I read the papers on correct desensitization and the insulin being desensitized is lowered at any sign of discomfortā¦ that definitely did not happen.
Iām supposed to start an experimental mast cell allergy medication tomorrow. I hope it helps. Every insulin injection causes a severe reaction now. Iām avoiding injections or delaying them to try and control when I have anaphylaxis. It is extremely rough. Iām hardly eating. Iām swelling everywhere. I started taking b6, b12, and a DAO enzyme and I have begun able to reduce the swelling and discomfort faster. Eating lower carb helps lower need for insulin but I was having muscle wasting also. Taking jardiance helped a lot but then my genitals started swelling and I freaked out. However I think that happens because peeing out the excess type 1 sugar levels invites yeast growth. So I think the swelling was a gigantic yeast infection and not part of that gangrene of the genitals or whatever. I noticed the issue and told my dr I was stopping it for now.