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Anyone stopped taking Lantus (and why?!)



Took me 47 years to switch. All this time I thought I was a "bad diabetic". Apparently I'm not!
 
Hi Moggies12,

Lantus and levemir don't agree with many people as I found out through this forum just over 2 years ago and this lead me to treat myself using my daughter's insulatard until I complained to the Hospital Trust via PAL as the consultant REFUSED to believe me......I suffered with extreme tiredness, fatigue, drugged up state, my walk became a shuffle as I had not strength to do anything else and I had to reduce my hours of work..I was lucky not to have any 'pains'even though my BSs were not too bad. As soon as I used the insulatard all the tiredness went away and I finally got porcine which I used for just over a year....The consultant did write an apology but by then I had no trust in him. Finally got referred to Addenbrookes DIABETES TEAM who changed my insulins and put me through DAFNE.....a real GOD SEND..where I discovered why things were happening to me and what adrenaline and activities was doing to my BSs. At 2013 my HBA1C had gone up to 8.9% and it was thought that a pump was required. After 5 days on DAFNE my BSs were in good single figures and I haven't looked back. I now only use the DAFNE team instead of a DSN though these nurses are in the same dept as my new diabetes clinic. Had my DAFNE review yeaterday and my HBA1c is 49 or 6.6% in old money....I'm using Apidra,
Humulin I for long lasting insulin and I take 6 X 500mg metformin SR tablets as I'm insulin resistant. I hope my story will help you. If you haven't done DAFNE get yourself on this course.
 

Hi nigelho
Glad you've got things sorted out. Reading several posts on here it does seem to be such a struggle for a lot of folks.
I've found everyone's been very supportive up to now. I've looked on the DAFNE site and they don't seem to do their courses in my NHS area. Although I have to say, I've been given lots of things to help with carb counting including an Accuchek Aviva Expert meter (which is clever!) So I was pretty confident I was getting to grips with things. I haven't been diagnosed long, so haven't a wealth of figures to prove it though! The DIabetic nurses seem well pleased with my progress but I know I've loads yet to learn.
It's just this last week or so of awful pain and lack of sleep has knocked me for six.
 
@Moggies12 do ask your hospital directly because if they don't do DAFNE they almost certainly do something similar and it could make a huge difference to you
 
I also found I had high morning basal requirements. I was able to sort this out using two Lantus doses a day, not at 12 hour intervals, but at bedtime and getting up time. The doses were not the same either.

It's a shame doctors are often too simplistic about suggesting basal doses, assuming all of us have constant flat basal requirements all 24 hours of the day. Of course we don't. A lot can be achieved through more flexible basal dosing - not everyone needs a pump in order to be able to match their basal requirements, though there is no doubt that the pump is the most powerful tool for doing this
 
Spiker said:
A lot can be achieved through more flexible basal dosing - not everyone needs a pump in order to be able to match their basal requirements, though there is no doubt that the pump is the most powerful tool for doing this
Click to expand...

I am beginning to agree and contemplating going back to MDI again with my new found knowledge from Bernstein and this forum...

My main problems -

Dawn phenomenon: I understand a bolus when waking can counter this, not ideal (as will still be high upon waking), won't always remember!

Unpredictability of insulin with exercise: lantus seems to work faster and end sooner after exercise, perhaps lchf / split dose can help here...? The overall action of lantus is not predictable and varies person to person and by dosing too.
 
Thanks everyone!
The nurse is going to speak to the consultant to discuss things and get back to me.
 
Applenerd81 said:
I am beginning to agree and contemplating going back to MDI again with my new found knowledge
from Bernstein and this forum...
Click to expand...
Same here, as I am getting sick of the constant skin damage as well as the inconvenience of being attached to something 24x7. But as you say there are questions and challenges going back to MDI.

The overall action of lantus is not predictable and varies person to person and by dosing too.
Click to expand...

Well all insulins vary in their total action and duration of action, based on dosage and on the individual.

I guess I was lucky that I didn't get the unpredictability some people are reporting for Lantus. If unpredictability means that the same dose on the same person has different action and/or duration? That's a very poor characteristic in any insulin.
 
Spiker said:
If unpredictability means that the same dose on the same person has different action and/or duration? That's a very poor characteristic in any insulin.
Click to expand...
Yep, agreed. Which is why I no longer use it. I have found Levemir to be much more predictable.
 
Spiker said:
If unpredictability means that the same dose on the same person has different action and/or duration? That's a very poor characteristic in any insulin.
Click to expand...

Unfortunately, for me that's exactly what it means, pump can provide an hour by hour control. Lantus, once injected, is not predictable, especially once exercise is brought into the equation.

To me it's impossible for an insulin injected once a day to perform exactly the same each day. Split dose will no doubt help somewhat but still can't be as effective as hour by hour control.
 
Stopped using it a couple of weeks ago, used to use it twice a day once in the morning once at night. But I found that taking he night time dose would make me go low for hours and the morning doses weren't working no matter how much I injected. Have moved to Levemir but have found the same problem with the morning it just doesn't work for me at all.
 

Hi everyone, thanks for all your suggestions.
Consultant says as my bG levels were so high when I was diagnosed, (ketones were almost off the scale) it's Neuritis as my body is adjusting and it wouldn't matter what insulin I was on it'd likely be the same. The only answer is to take medication (amitriptyline and/or Gabapeptin) to dull the pain. They have also suggested relaxing my bG levels just a little. I've an appointment with the doc on Monday to see if the amitriptyline is doing the trick or if I need the Gabapeptin. Consultant appt the following week.
Can't get used to all these trips to clinics, chemists etc! And not keen on more meds (slippery slope...) but needs must. Here's hoping that helps and we get some sleep!
 
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