Insulin allergy - multiple insulins

[LoisCoxx]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x

 

[Juicyj]

Hi and welcome back @LoisCoxx

Might be a silly question as i've never had an insulin allergy but have you tried taking anti histamine for the reaction ?

 

[Antje77]

Hi @LoisCoxx , and welcome back!

I don't know anything about this problem really, but it sounds difficult and I understand it giving you anxiety. I believe it's pretty rare though, so I'll throw in my meagre 2 cents anyway.

I seem to remember reading a post by someone who had had to switch back to the older animal based insulins to solve the problem. I've forgotten the details and I'm not even sure if I read about it on this forum. But it might be useful to search for information with both 'allergy' and 'animal insulin' included as search words.

Wish you all the best!

 

[michita]

Hello, I remember seeing a post on insulin allergy by a member.. which was this one below. I hope you find a solution.

https://www.diabetes.co.uk/forum/threads/allergic-to-insulin.127996/

 

[LoisCoxx]

Hi and welcome back @LoisCoxx

Might be a silly question as i've never had an insulin allergy but have you tried taking anti histamine for the reaction ?

Hi,

Thanks for your response! And it’s not a silly question at all. Yes I take antihistamines fairly regularly and it helps sometimes but often doesn’t make a difference. When I ended up in A and E I had taken two different types of antihistamines and it wasn’t helpful at all. I feel like tearing my hair out over this!

 

[MarkMunday]

Have you considered using a pump? Gradual infusion may be less likely to trigger an allergic reaction. Worth trying. Another option is to switch to Regular and NPH. They are pre-analogue insulins and may not contain the ingredient you are allergic to. You could also try the even older animal insulins (beef or pork), if they are still available. You really need to find a doctor who believes your story and helps solve the problem.

 

[DCUKMod]

Hi,

Thanks for your response! And it’s not a silly question at all. Yes I take antihistamines fairly regularly and it helps sometimes but often doesn’t make a difference. When I ended up in A and E I had taken two different types of antihistamines and it wasn’t helpful at all. I feel like tearing my hair out over this!

Have you retried any of the insulins you historically had a reaction to?

Whilst not an insulin user, I can't comment on that specifically, but I do have a coupe of foods (that I, annoyingly, really like) that I have to give up every now and then, due to unwanted reactions. After a while I can restart them for a while, then repeat.

Of course, that would be something you would need to discuss with whomever prescribes your insulin to ensure you remained safe throughout any trial.

I know changing any medication is a total pain, but I wonder if there is an argument for changing insulins every few months. I have no idea; I'm just wondering.

 

[JMK1954]

Beef insulins are no longer produced at all. Pork insulins are produced in the UK by Wockhardt, but only the most basic have been available since c. 2004 - 2006. In a statement about a year ago, the company only guaranteed to continue production for another five years. Most HCPs seem to be afraid of any animal insulin because they have no experience of seeing it used. As a result, they tend to be extremely reluctant to prescribe it. Several forum members have posted about this over a period of years.

 

[pamod]

Hi I have swelling around my injection sites I have been told just keep changing the injection site but I am running out of places. The doctors have not however offered me an alternative insulin I like you changed from lantis to levemere After nighttime hypos .

 

[Dark Horse]

I suggest asking to be referred to an allergy specialist:-

1. Some people with insulin allergy are allergic to a preservative or other ingredient rather than the insulin itself. If the precise cause of the allergy is identified, it might be possible to avoid it. For example, there is a table in this document which lists the different insulins and their ingredients (may be out of date so would need to be checked):- https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1398-9995.2007.01567.x
2. There may be desensitisation protocols available for insulin allergy
3. You might be prescribed an Epipen in case you have another severe reaction

Further reading:-
https://beyondtype1.org/insulin-all...you're allergic to,or hives at injection site

https://ctajournal.biomedcentral.co...#:~:text=Insulin allergy affects 0.1–3,7,8,9].
https://www.practicaldiabetes.com/a...stigation-and-treatment-with-immunodepletion/
file:///media/fuse/drivefs-f699364e00543c353a6ee688332ff1da/root/Documents%20(1)/DES/17-Article%20Text-62-1-10-20081203.pdf
This is an article which your GP should be able to access:- https://www.uptodate.com/contents/hypersensitivity-reactions-to-insulins

 

[Desbrina]

I’ve had reactions to every long acting insulin I’ve been on.

Started on lantus and had horrible burning at the injection site.
Levimir would itch and I could scratch myself raw.
Tried Humnlin, can’t remember why I stopped it.
Now on Tresiba which gives me pain at the site for about an hour after taking it

Nurse originally though it was the needles but I can use novorapid without issue

 

[devans]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x

Thanks for sharing this. I have been a typeII for 35 years and over the past 12 months have had similar symptoms. Also made to feel as if I am not being believed.

 

[Morpaul]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x

Hi Lois,
I became T1 after cancer surgery in 2006. After about 6 months injecting, I developed the symptoms you describe. I also had occasion to go to A&E with anaphylactic shock. Luckily it did not affect my breathing.
I am treated at NUH Nottingham, a tertiary centre. They immediately understood the seriousness and referred my to Immunology. The Professor there was equally concerned and had never seen a case of Insulin allergy, though did research on it. It is quite rare as I'm sure you realise.
They tested me for the usual 30 or so substances that can cause allergic reactions, as well as to components that can be mixed with, or come into contact with, the insulin - such as zinc, the membrane on vials, the metal in the needles etc.. All came back negative. They tested my immune response markers IGG and IGE from blood tests and these came back positive. They then did patch tests of all licensed UK insulins. I reacted to them all. Conclusion - a true allergy to insulin.
The next step was to find a way of mitigating the reaction. The answer was to desensitise me a brand of insulin. I had reacted least to Apidra so they used that. The process is similar to what they do to people with peanut allergies. They diluted the apidra in saline and then injected a small amount. Wait 10 minutes then if no reaction, double the dose and see if there is a reaction. This continues until they reach a 'normal' level of insulin that you would expect to give as a bolus. If at any stage I reacted to a dose then they go back two steps and then move forward. At the same time I was given an insulin pump. The theory is that through this process you fool the body into thinking the insulin must be OK so the immune system doesn't react. the insulin pump through it's basal settings gives the body tiny amounts of insulin every few minutes thus keeping up the drip-feed.
And here I am 14 years later. I still get some issues but the core allergic response has been tempered.
Now, my advice is to get your diabetic team to refer you asap to Immunology. Feel free to show them this response. I do not know where you are supported from - GP or district Hospital. But you need to be seen by experts in allergies inn Immunology so this may well be at a different hospital/centre. Please do NOT allow them to fob you off. Allergic reactions can be fatal specially where respiration is concerned. I have an epic-pen in case I need one though luckily have not needed it.
We can talk more but this should help and reassure you.
Take care
Paul

 

[Lorraine A]

I am T2D Insulin Dependant also severe brittle asthmatic I carry an epipen and am on anti IGE therapy to try stop my allergic reactions which have worked better with my asthma

I too have had many reactions to insulin I suffer for multiple life threatening allergies mainly to asthma drugs antibiotics etc

I have had the same as you severe reactions affecting skin huge hives all over my body after taking humalog and humalin fir almost 13 years with no such reaction. It was so bad I changed to several insulin even tested to see if the needles were the cause.

I now have an iport which is very easy to put on all my injections go through this fir 3 days then I remove resight another one.

Yes I still get reaction where it has been but I take antihistermines 3 times daily this has helped hugely

Fortunately my GPS are great I literally injected in front of them they could see within minutes how the hives covered all of my body.

I was fast tracked day after to see team at hospital who did trial with iport which was truly fantastic for me.

I am now on novarapid and toujeo I was told its likely the issue was the carrier fluid for the insulin reacted

I have bi weekly injections for asthma subcut and have no reaction so I know it's not the needles

Ask about trialing iport

 

[Lorraine A]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x

See my reply on thread very similar but useful info for you hope it helps

 

[jnk001]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x

Hello,

I could not tolerate "human" insulin which is very misnamed as it is artificial like analogue is . I went onto pork insulin for many years as there were never any side effects with that .

If your health team tell you that pork insulin is no longer available they are wrong and you may need to insist on trying it if they are stubborn ( if you wish to )- I believe this happens a lot , personally my health team were fine with me going on it.

The action time is different so you need to change the amount and way you use it but this can be managed.

The IDDT ( insulin dependant diabetes trust ) have a lot of information on their website and they are very helpful if you email them with any questions

 

[biotechboy]

I noticed that each of the insulins that you have used is an analogue, and not the exact human insulin that a normal pancreas secretes.
Have you ever tried Humulin or Novolin? Those insulins are exact sequenced proteins , identical to human insulin. They will work slower, but may not cause an allergic reaction.

 

[AJHopewell]

Hi, I have had this issue for all of the time I have been T1, exactly the same symptoms though never got to the breathing issues. Mine was narrowed down to being long acting insulins and at the time the 'human' insulins were coming out as they thought it was the zinc preservative in long acting the new 'human' format should work, it didn't! Mine has been resolved as I have been put onto a pump and as I don't react to short acting insulin I am ok.

When I was on the last 'old' style zinc based animal insulins the next step was to do allergy tests to find out the specific ingredient so that I could avoid it. I haven't needed to go down that route but that is what they recommended for me. This may be an option for you as I remember how horrible I felt with the pain of the sites when injecting.

I hope you get a resolve soon!

 

[caroline_kelly]

I’m a life time diabetic born with type one.im allergic to human insulin and have been on pork insulin my intire life the insulin rejects after a certain amount of time and either upsets your skin or blood sugars I’ve been out of control.for ten years as they won’t change my insulin this insulin put me in a coma as a child.and is rejecting now and won’t work but I have to live with the fact they won’t change it even thou the manufacturers still make my insulin and they are not prepared to get me another insulin.luckily my body is trained to bring me round when I go out cold.or in DKA. You have to persist with your doctors to make them see through regularly taking blood sugars and monitoring your food.im on dexcom now which if it works will proof my point.

 

[Jantib]

Hello all,

Had completely forgotten about this forum so was nice to find it again. I have had T1D for 13 years this year, my main issue is around being allergic to insulin. When I was first diagnosed I was on Novorapid and Lantus for around 4/5 years when I developed an allergy to Novorapid - itching and swelling around injection sites, hard to control BG due to this. My consultant swapped me onto Apidra where I happily sat for around 7 years before the same thing happened again - redness, temp and swelling around injection site and feeling generally rotten. I was then swapped onto Humalog. This time I lasted around 2 weeks before having another reaction - this one was worse, lots of swelling, heat and pain around site, rash all over trunk neck and face, shortness of breath, high heart rate. I ended up in hospital very briefly for monitoring and sent home on Fiasp but the whole experience was scary and not something I want to experience again or in a worse form.

I, understandably, have quite a lot of anxiety surrounding insulin now and if this happens again. I've been on Fiasp for a few months now and i do have small reactions when I take it, mainly just rash and itching around the site. This happened with Humalog before the big reaction as well. I take antihistamines fairly regularly I'm just finding it difficult as I'm scared of having another reaction and also how many other options there are for insulin. I've spoken to my diabetes team about it, and although they say they understand my fears I have this sense of not being fully believed and being made to feel like I'm being dramatic. I also find it quite stressful changing insulin as my blood sugars seem to go a bit hay wire when I get used to it and it takes a while to settle down, no matter how 'similarly acting' professionals tell me the insulin types are. When I had the Humalog reaction my team didn't know about it as I attended another hospital even though I had emailed the details and left phone messages to ask for a call back,

Must add that I swapped from Lantus to levemir due to night hypos a few years ago now and the reactions to seem to directly correlate with the bolus insulin sites etc. I also react to Actrapid when on sliding scale, not as severely but I itch all over and get a bit hot and uncomfortable -presumably this is due to not having an injection site as such.

I'm just curious as to whether anyone else has had anything remotely similar - I tried searching the forum with no joy. Or if anyone could offer any advice. Maybe I just needed to ramble the story out for reassurance that I'm not dramatic or going mad!

Many thanks in advance

Lois x