Allergy to long acting insulins

[worcesterwoman]

Hello
Not sure if there is any wisdom out there. I have developed a nasty allergy to Levimir, this is not the first time I have had problems with long acting insulins. At the moment I am getting by with Novorapid since May 23rd..
I have presumed type 2, but now the I am asking for blood tests to check for antibodies etc so that a type 1 diagnosis would follow and then the option of a pump. I do have a complex history of conditions and currently under neuro geneticists for diagnosis of two or three rare geentic conditions. So, othing straightforward.
Atthe moment I am havig to wake every 3 hours to test and inject Novorapid as necessary to keep within target range. I am so tired! As things stand I am taking more or less half the total amount of insulin that I was and have got glucose levels to an average 7.6 and 95% in target using the Libre 2 sensor. I have been struggling since January with a reaction to Levimir which has seen glucose levels steadily rise and time in target drop to 56% at the lowest point when the allergic reaction got to crisis point.
As things stand the diabetic GP may make a decision once blood test results are available possibly tomorrow, am not holding my breath though. The hospital nurse I did speak with changed my short acting insulin for a 'better' one which also caused an allergic reaction... so back toNovorapid. She can't help further and certainly not with a pump, I have to wait until the GP sees the test results and then she says he will refer to the hospital doctor. As we only have locums I am not too sure when or if I will get the help I need, I was removed from the patient list in 2019 pre cvoid. Needless to say trying to get in touch with the surgery is a nightmare and the last time I tried to explain everything I was told to use dipsticks.
Anyone elsein this kind of situation?

 

[Deleted member 527103]

Sorry to read about your issues @worcesterwoman
You mention that you have tried Levemir. Have you tried any other omg acting insulins like Tresiba or Lantus?

If you do have issues, only with long acting insulin but not short acting, then an insulin pump is an option as it only uses fast acting insulin.

 

[worcesterwoman]

Sorry to read about your issues @worcesterwoman
You mention that you have tried Levemir. Have you tried any other omg acting insulins like Tresiba or Lantus?

If you do have issues, only with long acting insulin but not short acting, then an insulin pump is an option as it only uses fast acting insulin.

Yes, this is the third time I have had reactions to long acting, I also reacted to Lyumjev in May when the nurse changed me from Novorapid. Apparently there is no way I can have a pump while being a type 2, but as I haven't had any off the tests for antibodies etc there is a possibility that I may be type 1.

 

[Deleted member 527103]

I also reacted to Lyumjev in May when the nurse changed me from Novorapid.

Any reason why you didn't try Fiasp?
My understanding is that Fiasp is NovoRapid with something added to it to make it faster. In fact Fiasp stands for Fast Insulin ASParte and NovoRapid is the brand name for the generic insulin asparte.
However, this would not help your problem with slow acting insulin.

What about mixed insulins? I appreciate they are not as flexible but it would allow you to sleep through the night without a bolus every 3 hours.

 

[worcesterwoman]

Any reason why you didn't try Fiasp?
My understanding is that Fiasp is NovoRapid with something added to it to make it faster. In fact Fiasp stands for Fast Insulin ASParte and NovoRapid is the brand name for the generic insulin asparte.
However, this would not help your problem with slow acting insulin.

What about mixed insulins? I appreciate they are not as flexible but it would allow you to sleep through the night without a bolus every 3 hours.

Mixed insulin is where I started about 20 years ago and I had problems with that, it was a long time so memory is hazy. As things stand I have little in the way of injection sites left as the Levimir has caused lumps in my tummy, my leg reacted pretty quickly when I changed to that. Arms didn't work, partly due to arthritis but also a reaction. It may be that I am primed to react now that I had the episode with Levimir and anything might be a problem.
The Lymjev I tried is a faster acting rapid insulin and that worked okay but the reaction was grim with every dose.
Bit of a tough one.

 

[EllieM]

I'd hope that your GP would do a cpeptide test as well as GAD antibodies, as it's important to know how much of your own insulin you still have. (If you are still making your own insulin then there may be medication options other than insulin? T2 drugs have come a long way in the last 20 years.)

We've had a few thread here from people with insulin allergies.

The thread below might be of interest.

Insulin allergy - multiple insulins

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 -...

www.diabetes.co.uk

In your position I'd be pushing hard for a referral to an endocrinologist and/or an allergy specialist. It seems crazy that because you have a T2 label you are ineligible for a pump even under your exceptional circumstances.

 

[searley]

Hello
Not sure if there is any wisdom out there. I have developed a nasty allergy to Levimir, this is not the first time I have had problems with long acting insulins. At the moment I am getting by with Novorapid since May 23rd..
I have presumed type 2, but now the I am asking for blood tests to check for antibodies etc so that a type 1 diagnosis would follow and then the option of a pump. I do have a complex history of conditions and currently under neuro geneticists for diagnosis of two or three rare geentic conditions. So, othing straightforward.
Atthe moment I am havig to wake every 3 hours to test and inject Novorapid as necessary to keep within target range. I am so tired! As things stand I am taking more or less half the total amount of insulin that I was and have got glucose levels to an average 7.6 and 95% in target using the Libre 2 sensor. I have been struggling since January with a reaction to Levimir which has seen glucose levels steadily rise and time in target drop to 56% at the lowest point when the allergic reaction got to crisis point.
As things stand the diabetic GP may make a decision once blood test results are available possibly tomorrow, am not holding my breath though. The hospital nurse I did speak with changed my short acting insulin for a 'better' one which also caused an allergic reaction... so back toNovorapid. She can't help further and certainly not with a pump, I have to wait until the GP sees the test results and then she says he will refer to the hospital doctor. As we only have locums I am not too sure when or if I will get the help I need, I was removed from the patient list in 2019 pre cvoid. Needless to say trying to get in touch with the surgery is a nightmare and the last time I tried to explain everything I was told to use dipsticks.
Anyone elsein this kind of situation?

Instead of levemir there are other options
I had issue with the novo insulins both rapid and levemir


You could try lantus or tresiba and if neither of those work, you could go to the older humalin I

Humalin I is a long acting insulin but only typically worked for about 14 hours for me so I split the dose, but this would be better for you than rapid alone