I’ve have great Doctors but the immune response is worse. Need help as my Doctors are at a lost. The swelling continues to be worse on my insulin therapy. The only way it goes away is for the insulin to be substantially reduced. Need a referral who can tackle this animal.
Vicky, I’m sorry but I can’t seem to understand your post…I’m listing if you want to expand on the swelling - is it edema?
1 Like
No it is joint swelling - not edema. It has been diagnosed as a immune response to insulin. My immune system is treating insulin as a foreign matter. 
️
Have you tried using different types of insulin? (i.e. Novalog instead of Humalog, or vice versa)
Or have you tried switching between an insulin pump or the syringes? Sorry if these seem like basic or stupid questions, I’m just trying to understand your situation better
Yes. To date, I have tried Humulin R, Novolog, Humalog, Apidra. I am currently on shots. It’s all the same. Lantas is like a saline solution on me and Levimir works with a site reaction. We are running out of options.
Have you tried Tresiba as a basal. One injection a day and it keep you level thru the night, no more lows! I switched from Levemire to Tresiba and am happy I did. I hope you figure it out. Good luck.
Thank you. The basil is not the most pressing challenge. It’s the short-acting, fast-acting, or rapid acting bolus that causes the swelling. My body just can’t take any more than 6 units a day. I start having difficulty breathing and my joints swell… We have investigated pork insulin but it’s difficult to get approval FDA and USDA. When I spoke with the insulin cos., what I am experiencing is rare but each said they have had documented cases of the problem.
I’m sorry this is happening to you. Have you tried going to a specialist in immunology and or autoimmune diseases? Do the insulin companies know anyone who can help you figure this out? I assume they must if they have had other cases.
No one has been able to help so far. I have seen an immunologist and am working with a knowledgeable Endo. The insulin cos have not been forthcoming. For now, I have to be patient and hope that someone has some answers soon.
Have you considered Afrezza ? It is a fast acting insulin that is inhaled.
If your immune response is triggered by the preservatives added to insulin, and not the insulin itself, it might be worth looking into. Search Afrezza on this site, there are many other discussions on it.
I second the Afrezza rec.[quote=“Vicky, post:7, topic:54231”]
We have investigated pork insulin but it’s difficult to get approval FDA and USDA.
[/quote]
I used to se pork Regular insulin. I used Lilly’s product for many years in the mid to late '80’s. I can’t imagine that all animal production has been shut down but I have not followed that in many years.
If I had this problem I would go straight to the Mayo Clinic. I would also limit carbs and concentrate on protein and fat nutrition. You’re in a tough spot – good luck!
Hi, you say the basal insulin is not the problem, rather it is the fast acting that is the problem.
In your case i’d definitely be trying tresiba - my experience on it was that it gave very stable base levels. When combined with very low carb eating (basically heaps of healthy fats, moderate amounts of quality protein, and carbs limited to non-starchy vegetables - including vegetable fruits, but no sweet fruits), I would require very little to no fast acting insulin at all.
Exercise also helps with reducing meal blood sugars (even without fast acting insulin), so maybe a brisk walk or other exercise after meals may also help with reducing or even eliminating the need for fast acting insulins.
Thank you. I have already adjusted my diet to avoid fast acting insulin. The pain is immediate so you don’t have a problem avoiding carbs.
1 Like
Beef and pork insulins are no longer sold in the United States or Canada. The idea was to fake my immune system out so it wouldn’t attack the insulin.
I’ve also investigated this solution and I have it on my list when I see the allergist on the 11th. Thanks for the suggestion.
Humulin R is actually human insulin. You shouldn’t be allergic to that. This suggests that you may be allergic to one of the other ingredients. An allergist can help you. A common thing to do with a mild allergy is to treat with an anti-histamine. In more severe cases (like yours) an allergist will seek to desensitize you to the insulin possibly in conjunction with treatments to suppress your allergic and immune reaction.
Keep reminding yourself, you can get through this.
Thank you. Because I have been on an insulin pump for 32 years, there’s not a way to desensitize me (per the allergist). I guess that is a method that is used when you develop an insulin allergy on shots. As a patient, you would be transferred to pump therapy so that you could receive incremental doses of insulin over a longer period of time thereby desensitizing you to the insulin. There were red flags with Humulin R too but the symptoms were attributed to other things and for awhile manageable. Immune suppressants are being considered but the only one I am a candidate is the one that is given after a kidney replacement.
Update. Islet transplant being recommended. Dr says there are no more options. Need an insulin that is pure. I asked him about the Humulin insulin and he explained how it is made. He explained that the active ingredient is made to mimic human insulin but it is not human insulin. Getting my pcp and endo to weigh in this week. All for now.
Either there was a miscommunication or your doctor is misinformed. The insulin molecule in Humulin R is “identical” to human insulin. The insulin molecule in Humalog is “not identical” to human insulin. You can import beef and pork insulin into the US, you just need to get a waiver which your doctors can navigate.
An islet transplant will require immune suppressant drugs, just like with a kidney transplant.
I’m not sure about the molecules. Way above my head. Insulin cos sent documentation to identify active and inactive ingredients for all the insulins. I spoke with them also to request the information. All of them said that this is a rare problem but does occur.