A woman with Type 1 chronicles a difficult journey to use the medicine that keeps her both alive and unwell.

I recently read of a girl with Type 1 diabetes who was trying to find answers to an insulin allergy, and I wanted to share the long view on this subject. I have dealt with insulin allergies for more than 33 years, but have just as few answers.

I developed Type 1 diabetes in 1983 and was prescribed beef-pork insulin. I soon was switched over to pork-based insulin. I developed a few hives at the site of injections and elsewhere, but I was told by my endocrinologist that I was not allergic to the insulin. If I were, my endocrinologist argued, I would have experienced severe anaphylaxis.

Two years later, I was switched over to synthetic Humulin. When I took it, I became dizzy and weak. At one point, my heart raced and I had to go to the ER. My endocrinologist didn’t understand why this drug had such an effect on me, but I was allowed to go back on pork-based insulin.

I remained on pork-based insulin for the next 25 years, occasionally trying to switch to Novolin, Novolog, Humulin, and Humalog, with little success. Each time I switched, I would last about two weeks and then need to go back on pork-based insulin. The longer I tried to remain on the other insulins, the worse I felt. It’s not as if the pork-based insulin agreed with me; I felt off so often that off felt normal.

I went to Johns Hopkins Hospital, where I was skin-tested for an allergy to Novolog; the skin test came back negative. I went home and tried Novolog and Novolin again, with the same disappointing results. I also went to a environmental health clinic in Dallas, where I was tested for every allergy under the sun, but I left without a clear protocol of what to do next. I have been tested by top people for mast cell activation disorder – a type of histamine overreaction which causes a lot of allergy symptoms and misery; it’s not clear if I have this disorder because it’s very hard to diagnose. I’ve seen many endocrinologists, allergists, neurologists, and holistic practitioners. I have had good allergists and a wonderful long-suffering endocrinologist who has been wonderful to me, but I still have not gotten any good answers.

Then Lilly pulled their pork-based insulin from the marketplace, leaving those like me without an insulin to use. I imported pork and beef insulin that was still available in Europe. When I tried the imported pork insulin, my eyelids swelled up and I developed terrible muscle aches. The beef insulin left me feeling even worse.

Insulin is just one of many drugs that I can’t tolerate. I become deathly ill from codeine, antibiotics, blood pressure meds, contrast agents, and Xolair, an asthma drug that was supposed to help me with my allergies.

I have been taking Benadryl to tolerate the insulin, and that has helped a bit. I have also been on Apidra for the last eight years. Two years ago, I began taking Medrol, a steroid which has helped; I have been duly warned one cannot live on steroids without dire consequences. I am now on a new protocol of high-dose fexofenadine (Allegra) twice a day, but (surprise) I am not feeling great from it.

This is my history of my insulin allergy.

This story has been edited for clarity.