Thanks everyone so much for all your advice with this!
As of today (Day 5 of Adventures in Tight Control) I’m still a balloon. I fell off the bandwagon and didn’t do insulin for one of those days. The swelling started to go down, just as I thought it would, which means I guess I’m at square 1. Since it’s Saturday, I’ve been compiling a list of questions and concerns that I need to ask. I’m actually going to print out everyone’s comments and show her, and see what she thinks.
Steps I’m taking now are: Switching from Apidra to Humalog, keeping my counts in the 150-190 range, elevating my feet at night, drinking plenty of fluids, and keeping a low sodium diet.
I’ve discussed this problem I’m having with my boss at work, and am looking into getting a short medical leave of absence. Since my job involves being on my feet quite a bit and running around, I think it would be better if I gave my body a fair chance to recover.
I'm in a very similiar situation. I've been uncontrolled (though always under the care of an Endo) for more than 15 years. I'm hoping to get my 9.3 something hemoglobin to 8,8 by January and hopefully to under 7 by the summer. I know that we can do it!
I just started Lantus a week ago and have exactly the same symptoms. In addition I also have a stiff neck. I contacted my doctor and he said to keep an eye on it. He says he never had a patient who had allergic reactions to Lantus. I don’t think I can continue with this. Upon awakening in the morning , puffy face around eyes and cheeks, nose congested, slight headache. Sinuses acted up. As soon as I get up, walk around and have coffee , everything goes back to normal
I’m very allergic to dust mites (and a bunch of other things) and this basically describes most mornings for me. I sleep with my face smooshed against dust-mite-infested bedding all night (all bedding has dust mites, even if you’ve got allergen pillow and mattress covers like I do) and so in the morning I wake up with my eyes watery and puffy, face puffy, stuffed up, congested, and coughing. Once I get up and clear all that gunk out and drink something and take an antihistamine, I feel better.
I think anyone who suspects they have an insulin allergy should see an allergist to get properly diagnosed. An insulin allergy has major implications for diabetes treatment and can result in potentially severe reactions even if initial reactions are mild. What I see a lot of people describing seem more in line with environmental allergies than medication allergies, especially when just walking around helps (usually allergy symptoms would persist if you continued to be exposed such as medication that persists in your system for several days, but would lessen or go away entirely if you moved away from an allergen such as dust). From what I have read, allergies to insulin are very rare, but environmental allergies are quite common. Allergies to anything can develop at any age, so it’s entirely possible to suddenly become allergic to dust or pollen even when you’re an adult.
thank you for your reply. Food for thought. It could be the time of the year right now with everything blooming. I skipped my lantus dose last night and I think I feel better this morning, but still have some symptoms. Could be Placebo Will take some antihistamine.
It’s definitely getting into allergy season where I am.
Have you talked to your endocrinoloigst about your symptoms? If they think the symptoms are from insulin, they could refer you to an allergist and prescribe a different type of insulin to take. I would definitely talk to them before skipping insulin altogether.
yes, I talked with him over the phone, He is a young doctor and said he never had anyone who experienced adverse effects on Lantus and to keep an eye on it. till I see him again in 3 weeks
Another thing to consider, which I believe might have been my problem (as this was a few years ago) What are your sugars like? Do you notice that your counts run lower now that you are on Lantus? Sugar makes your blood thicker, and when you suddenly take a majority of it out of your bloodstream, your body replaces it with water to try and keep the volume up. This can cause swelling and pooling of fluid in your body, so that’s another thing to consider. This was also explained to me a while ago so forgive me if my explanation of what can happen isn’t the best!
I prefer Tresiba over Lantus. I took Lantus for 3 weeks and did not like it. Tresiba is more modern, can be taken once per day, and vey stable. There is a coupon people can get where it only costs 15 dollars per month. No insurance needed…at least in the USA. I was able to run it with insurance and still got coupon.
I think some of us swell up on insulin like a balloon. Like a sponge. I know I do. The diuretic has brought some relief. I also find exercise helps the circulation and brings my glucose down…best of luck. good sharing and hearing of others and what helps!
Upon diagnosis I was 12.8 . Having a normal bs did not cause me to swell up but had crazy side effects. While I agree to get tested for allergens…another thing I think is your body getting used to a new normal. It took literally a year to feel okay in normal range. Keep trucking…keep talking to your doctor…and I promise…you’ll feel better at the end. Congratulations on taking control! Keep going ! You are doing your body (and mind) a huge favor.
Exactly right! I had a very high a1c for many many years. It’s the lowest it’s been right now in almost 15 years (and it’s still not great) and its amazing how many little things you notice that weren’t normal when you START to feel normal. For me, my body had gotten so used to there being an excessive amount of sugar in my blood that it wasn’t there anymore, I swelled up like a balloon. I think I had almost 20lb of water weight on me. Eventually as I started actually taking my insulin, it subsided. I don’t really notice any symptoms just from the insulin anymore, but back in 2010 it was driving me nuts.
I am allergic to All insulins. Can’t breath after taking. The Doctors are treating my symptoms now. Right now, for me, there’s nothing more that can be done. Have always been well controlled. Your body accommodates most drugs with time. It is rare to have an insulin allergy. I wish I could get off the human insulins and take Vesolin but it’s not available in the US. My immune system is in constant overdrive.
There are protocols that some have used successfully to treat insulin allergies. First off, are you allergic to human insulin (Regular and NPH)? If you are ok with Regular and NPH that is a big win since you may be able to treat you allergy while still maintaining blood sugar control. And note that there are different types of allergies, I will talk about a systemic reaction. A systemic allergic reaction should be diagnosed with an anti insulin antibody test. If you have high levels of these antibodies it will mean that your body is attacking the insulin and deactivating it, sometimes leading to what appears to be severe insulin resistance. It can also cause body wide symptoms like your breathing issue and hives all over.
Dr. Bernstein uses a protocol to reduce/eliminate insulin allergies. He starts of with injections of highly diluted insulin (like 1000:1) and then over time increases the dosing. If there are allergy symptoms he backs off and starts slower. He says that eventually he can acclimatize your body to the insulin allergen. He claims that he has good success with this method. This treatment is used with all kinds of allergens and is sometimes called “Low Dose Allergen” therapy. Perhaps you can see if you can find a doctor well versed in this approach for insulin allergies.
A couple of posts here talk about swollen legs. I went to a specialist for this a couple years back and he is of the opinion that diuretics are of little help for this condition. He prescribed support hose for this and that seems to have alleviated the condition. I’m using the lowest pressure ones, but sometimes the stronger ones are needed. Swelling in the legs and ankles is caused when the one-way valves in blood vessels fail to completely close and fluid accumulates in the extremities. Consider this as a possibility for edema confined to the legs vs edema that exists throughout the body.
Don’t know about Regular and NPH any more. I used these 2 insulins when I was first diagnosed at 13. At the time, I think these were both pork insulins. I’m 59 now.
Animal insulins are essentially no longer available in the US. Many people had allergic reactions to animal insulins. Regular was first approved by the FDA in 1982 and is made using recombinant DNA technology to synthesize an insulin molecule that is identical to human insulin. Since it is human insulin you should not have any allergic reaction to the insulin (although you may have a reaction to the other ingredients). Although more modern insulin analogs are available that work better, these insulins are available as a last resort if you are truly have trouble.
Read the insert that came with your insulin. I believe I read somewhere (maybe drugs.com) that sinus issues can be a side effect of insulin. This may not be the cause at all, but it could be worth looking into.
Are you seeing a board-certified allergist? Hopefully you are, since they specialize in diagnosing and treating allergies and are able to provide treatments that other doctors can’t. Most allergies are caused by allergen-specific IgE antibodies that detect the allergen and cause an almost immediate reaction with symptoms like hives, itching, breathing difficulties, and so on. There are also IgG antibodies that can bind to insulin and inactivate it, causing extreme insulin resistance, but I don’t think this is generally referred to as an insulin allergy. If you have an IgE-mediated allergy, then allergen immunotherapy (like what @Brian_BSC mentioned) can often work, but it must be done by an allergist as there are risks associated with it. I hope that whatever treatment you are currently using is working for you. I’m not allergic to insulin, but I know all too well the struggle of treating complex allergy issues.
Will take some antihistamine.