Lantus Users

[tim2000s]

At the request of @LucySW I'm flagging this issue that has been observed with Lantus here. @diamondnostril and I have both noticed unusual behaviour with Lantus.

In certain circumstances, it can act like a quick acting insulin and cause sudden blood sugar drops.

My story from the morning is here: http://www.diabetes.co.uk/forum/threads/has-anyone-seen-lantus-do-this.67751/#post-683265

Diamondnostril is here: http://www.diabetes.co.uk/forum/threads/hypo-after-lantus.52342/#post-480900

The summary is that if you inject somewhere where the Insulin is not absorbed properly into fatty tissue, it fails to work properly and effectively becomes short acting insulin.

1. The two side effects of this are obvious. Your blood sugar drops dramatically and unexpectedly (This has happened to me twice)
2. Your basal level gets messed up because the basal insulin has acted and been consumed too quickly.

Please be aware of this!

If anyone else has experienced this phenomenon, it would be good if you could let us know here so that we can escalate the awareness with the appropriate people within the UK and at Sanofi.

 

[diamondnostril]

Hi . . .

If you search my Posts you find several Threads on this same topic (those threads with "Night Hypos" or "Lantus" in the subject title).

After I made my discovery, in January this year, I kept a special eye out on the forum for people reporting similar problems with Lantus. They seemed to come up fairly regularly, every few weeks or so (although it seems to have tailed off recently). I even started replying by Private Message rather than on the open threads, because I was embarrassed to be repeating the same message so often.

Perhaps making this Thread "sticky" may be helpful? (if enough people say that they have experienced the same problem).

Regards,
Antony

 

[tim2000s]

Interestingly, in the topic about Tresiba, there is something from the Nottinghamshire health authority recommending a change to Tresiba for Lantus users that have experienced bad night time hypos. It would appear that there is knowledge of certain issues with Lantus in the medical community that seem, at first glance, to be related to this one.

 

[himtoo]

Hi @tim2000s and @diamondnostril

I have suffered a few shocking overnight hypos in recent years and i too take lantus and novorapid
my lantus dose is 30u that i take as 1 dose at tea time ( approx 6:30pm)

i have resorted to eating a snack at bedtime to try and ensure no low in the night.
my wife is a light sleeper and she worries a lot with these hypos.

the thing that strikes a chord with me is if i wake hypo at 1am -3am at about 2.7 this is nearly 7- 9 hours post bolus and by fixing the hypo with 15 grams CHO sometimes i will wake to 13-14's -- it makes me wonder if the lantus has exhausted itself in 9-10 hours
i do rotate my sites and tend to use backside for lantus

thanks for this tip and i shall attempt extra care with lantus injections

 

[Nicola M]

I take a split dose of Lantus in the morning/nightime. At night time I do my Lantus dose at around 10pm. I was noticing that almost every night at 11:30pm I was having a low blood sugar. I would treat it and then would wake up low again in the morning some time.

I spoke to my diabetes team and they suggested reducing my Lantus so now I'm on 6 units at night, it couldn't of been any fast acting insulin as I was 4 hours clear of having any.

I usually do my Lantus injection in my leg area.

 

[Heathenlass]

They have stopped prescribing Lantus in my locality because of its propensity for causing hypos, especially at night , and it's unpredictability .

It's been known for a while now that a) it doesn't last for 24 hours in everybody, some requiring split doses, b) it isn't in fact peak less in many people, and c) the dispersal rate can be unpredictable,, leading to unexpected how as it releases too quickly, or doesn't release at the rate it should leading to hypers And problems with bolus calculations..

Sanofi have known about this from the outset, and their marketing of it was somewhat aggressive and less than transparent. Having said that, some people do very well on it, but it's become clear that it is not suitable for all diabetics.

Signy

 

[tim2000s]

@Heathenlass When I was researching this last year, I found that a lot of local healthcare trusts were actively discouraging it because of these issues.

Seems to be something that, while Sanofi have known, about from the outset, more and more users are finding issue with.

 

[Heathenlass]

I was on of the first to be switched to Lantus , promoted with an almost evangelical fervour by Sanofi. During the years I was on it, I didn't have one night without a crashing hypo, and unexpected hypos that were obviously not bolus related . At the other end of the scale, there could be hours with my BG going sky high, followed by , yes you guessed it, a hypo. In addition to this, I had all kinds of other symptoms that couldn't really be explained, constant fatigue and brain fog she ing the most noticeable .

I underwent investigations for other health issues, all that came back negative. The one consistent thing was that it all started when I switched to Lantus . I asked many times to switch back to Insulatard, but met a wall of disbelief that Lantus was the cause, on the whole my " non compliance " and " poor management " was blamed, despite the fact that previously I had always had good control.

Finally, reports that Lantus was not all that it claimed to be filtered through, and one consultant suggested splitting the dose, whereas previously it was the mantra that it was a one dose a day insulin. The split dose, at child sized doses made no difference. I was still having night time hypo's, and felt bl@@dy ill :***:

Finally I switched hospitals, and the consultant agreed to to switch me back to Insulatard. Within a short space of time my BG was stable, and the brain fog and fatigue had disappeared My DSN told me in an informal conversation that they were no longer prescribing Lantus, as in their experience the amount of people experiencing problems was too high and Levemir was the first choice. Tresiba is not prescribed because of the cost, unfortunately . Although some people do very well on Lantus, the amount of people who don't is unacceptably high for my health authority.

I have since switched to Levemir because although I do well on Insulatard, there is a definite peak around five hours after injecting, and due to my lifestyle this could be problematic. I find Levemir problem free, thankfully

The years I spent on Lantus were truly hellish, not helped by the belief of HCPS's in what Sanofi had claimed was the reliability of Lantus, therefore if there were adverse effects or poor control, the blame lay with the user.

Signy

 

[tim2000s]

Thanks for that explanation @Heathenlass It very much mirrors my experience of Lantus. I discovered relatively early that it didn't last 24 hours, and switched to splitting my doses to compensate. Has to be said that the Diabetic Clinic didn't really know that much either.

Once I started to cycle in to work, I really hit the issues. As my leg muscles improved (and body fat levels on my legs reduced) I started to do my bedtime dose and see a massive variety in the waking blood glucose levels. Eating the same food/drink combinations, I'd wake up with ranges that went from 2.5 to 14.9, for no apparent reason. Similarly to you, no-one on the diabetic clinic side really seemed to know anything, and I didn't understand what i was doing wrong, as I couldn't see any pattern to these massive variances.

It was only last year, when I had the collapsing hypo in the middle of St Swithin's Lane that I could identify that there was a problem with Lantus. I'd eaten nothing, injected my normal morning dose, and here I was all of a sudden with a crashing hypo that knocked me down (and believe me this was the first time I've had a hypo that has had that effect, so I really wasn't happy). And the only insulin that could have done it was the Lantus. That's what brought the question up here and created this thread.

What's also very noticeable is that the bg level swings that I experienced quite a lot with Lantus aren't happening to anywhere near the same extent on Levemir. While three weeks isn't a huge amount of time to pass judgement, there does seem to be more predictability in Levemir, and I am able to push up and down with more alacrity. The pace of change is noticeably slower.

I am surprised that there has been no MHRA report on Lantus, because as far as I can see from the fairly large number of cases reported and that certain health authorities have stopped prescribing it, it doesn't seem to be fit for purpose. You shouldn't need to use an insulin to discover that it will nearly kill you or wreck your control due to the way it has been designed.

 

[Heathenlass]

Oh you are not alone in experiencing this
According to my DSN , there have been concerns raised nationwide by endocrinologists and diabeteologists , but where when and who with I don't know. Whatever the outcome, it seems many are now voting with their feet.

It's a shame that the majority of people on Lantus who are experiencing problems do not frequent forums such as this so do not know that they are not unique. In the same way, many people are not under the care of a specialist diabetic clinic, only their GP and practise nurse who are not the forefront fount of knowledge in many cases Unsuitability can lead to much more than the resulting effects on people's diabetes control, but also affects their lives harshly, and can make them feel inadequate and powerless. The whole nasty mess lead me to diabetes burnout resulting in a near miss severe DKA .

I agree that Levemir is much more smooth in action and predictable , plus the ability to be able to change doses without the two day wait is invaluable

Signy

 

[himtoo]

WOW
i too have had the sorts of issues described by @Heathenlass and @tim2000s

not all that often but very unexplainable all the same when it happens. i have rationalized it by saying my fast acting must have "pocketed" and not released properly , or it is a severe dawn phenomenon waking up with 14's.

this is extremely useful information and while i am current awaiting going on a pump I shall pursue the levemir should i not be successful in getting the pump soon.

thank you tim for raising this

 

[LucySW]

The years I spent on Lantus were truly hellish, not helped by the belief of HCPS's in what Sanofi had claimed was the reliability of Lantus, therefore if there were adverse effects or poor control, the blame lay with the user.

Gosh, Signy. In fact, WOW again. Thank you for telling that story, and *isn't* the disinformation/deception and the blaming of the user just pants.

I'm still quite happily on Insulatard. But it's still a low dose at night (3u, and 4u in the morning) thanks to low carb, so I haven't had any sort of hypo problem. My usage is going up, though.

Lucy

 

[totsy]

Very interesting, i think my lantus isn't working as should be either

 

[Heathenlass]

WOW
i too have had the sorts of issues described by @Heathenlass and @tim2000s

not all that often but very unexplainable all the same when it happens. i have rationalized it by saying my fast acting must have "pocketed" and not released properly , or it is a severe dawn phenomenon waking up with 14's.

this is extremely useful information and while i am current awaiting going on a pump I shall pursue the levemir should i not be successful in getting the pump soon.

thank you tim for raising this

Good luck with getting that pump, @himtoo ! ( interesting name, BTW!)

The first part of your rationalisation is partially correct, but that appears to be common with Lantus . It seems to "hoard " insulin, then release it in a swoosh when it damned well pleases

Levemir is worth enquiring about if you don't get the pump, or not yet! Hope you do, I sort of enjoy hearing that people get lucky in the pump lottery

Signy

 

[Heathenlass]

Gosh, Signy. In fact, WOW again. Thank you for telling that story, and *isn't* the disinformation/deception and the blaming of the user just pants.

I'm still quite happily on Insulatard. But it's still a low dose at night (3u, and 4u in the morning) thanks to low carb, so I haven't had any sort of hypo problem. My usage is going up, though.

Lucy

Blaming the user really is pants, and seems to be the case with too many patients, not only those on insulin . I was happy on Insulatard years ago, and still was the last time I used it apart from that pesky five hour peak. It always happened just when I couldn't stop doing what I was doing to head it off at the pass My doses are still low after all these years though, same for Insulatard and Levemir, 10 in the morning and 1.5 at night which according to "Them Who Know " makes no sense, but it works....for me !

@totsy - if you are having problems, speak to your HCP ( hospital based if possible ) They are seemingly waking up to the fact that Lantus has issues, and are more willing to switch .

I can't emphasise enough though, that it DOES work well for many, but for others it's a road to hell. We are so individual, and the reasons why it works or not could be for so many reasons , body chemistry, body mass, Saturn is in Kali Yuga... Who knows ?!


Signy

 

[tim2000s]

Your levemir doses reflect mine. I figure the low amount over night is linked to not consuming any carbs.

Just wonder what duration you see?

 

[Heathenlass]

Your levemir doses reflect mine. I figure the low amount over night is linked to not consuming any carbs.

Just wonder what duration you see?

I think you may be right Though my HCP team suspect I use Ye Darke Artes of BGL Control as they reckon it should be a roughiish split

Just in this thread though, so far, @LucySW , you and I use low doses. All low carb. Lucy and I are lean and I suspect you are if you're cycling ?

To be honest, I'm not sure of the duration as far as its lasting in me yet, I've not got round to testing it My timings are usually, but not always roughly 12 hours apart, and I haven't seen any rises towards the end of the day or in the morning . I do have Dawn Phenomenen though, but it's kind of counteracted by the fact I get up so chuffing early anyway, and wallop in the first dose before anything else along with novo so it's 15 minutes before eating . Weird science, I know, but it works for me

Signy

 

[Jaxx01]

I took my first ever dose of lantus last night 10 units as instructed and my sugars plummeted within 40 mons :/ was pretty nerve wracking seeing as it was my first injection lol. Im glad I came across this post though. Helped me understand it a bit more x

 

[K-ate]

So helpful to find this thread; I've been diabetic for 30 years now and had my first crashing unexplained hypo about a month ago when I did my morning lantus (20u; no split dosing) with a blood sugar of 14. Within 10 minutes I felt terrible, re-tested and was 1.9; it took an hour to get the sugars above 4. I then steadily crept up to about 20 no doubt due to the basal having been fully used up by the terrible hypo and being dumped into my system for some random reason. I sat high for about 3 days (dipping to about 12 then back up again) and it also instigated a real fear of my insulin. I've been on lantus for about 15 years and did find it to be a wonderful change from monotard/insulatard. I've backpacked the world with it, and had two children, but the last few months have been very hard and I'm yet to find out why. Currently the "drugs don't work" in the way I anticipate; I feel that I can eat the same thing/ drink the same thing and be 4 or 14. I try to explain it with things like stress/work vs non work days/exercise but am now wondering whether it's not all "my fault" and could be worth trying levemir. I currently have lantus as my basal, and humalog as my short acting which I take does of about 6, 8, 6 at meal times. Does anyone have any other reasons for deteriorating b/s control? I've always been pretty well controlled but since Christmas it's felt like a very hard time.

 

[noblehead]

@K-ate, could be injection site problems, bg control becomes sporadic and less predictable when insulin isn't absorbed as it should.