Lantus - decreasing rapidly

[mum2westiesGill]

Had to increase my lantus/BI in October due to lots of high (teens/20's/30's) BS levels.

During November have had to keep decreasing due to lots of hypos - how much longer can this carry on? Still eating the same food. No increased activity. At this rate I'll be taking no BI - frightening.com!

Oct
26u BI
8th 28u - increased
17th 30u
23rd 36u

Nov
1st 40u
2nd new BI pen?
5th 42u
12th 36u - decreased
19th 34u
20th 32u
23rd 30u
26th 26u
30th 22u

Dec
4th 18u - still waking up to hypos

 

[bennyg70]

Sounds a very similar situation too mine, but it went on for ages and ages. When first put on the balal bolus regime, I was on around 40 lantus units once a day.

This intially went up, even though Ihad swinging highs and lows. Then slowly down, for a couple of years I was on 30 units ish battleing against highs and lows and night hypos.

A doctor then cut it too 22 ish for months, still the same issues.

The 18 ish .... same issues.

Im now on 12, still have slightly swinging sugars, but i think that its more to do with my carb counting. But no nighttime hypos.

Do the docs overegg the lantus in the first instance?? Seems too b a very familiar pattern. After doing a lot of research for starting doses, I cannot see why I was started so high for my weight etc. but im much more inline with it now. Also Basal testing is essential to see what your basals are doing for you. It was only when I started basal testing that I really have started to understand MY diabetes. 🙂

Have you looked at http://www.lantus.com/hcp/dosing-titration/dosing-calculator.aspx for where the company think your starting dose should have been? Its only a guide but could offer some insight

 

[bennyg70]

Ive often wondered how id get on with NO basal insulin..

 

[Northerner]

Well, as you probably know, my lantus also decreased rapidly. Began on 20 units then had to start reducing after about 6 months. It came down to 11 after about 12 months, then 4 after a few more months. Stayed around that level for a couple of years, then started dropping again at the beginning of this year until I finally stopped it altogether in April this year 😱

Mine didn't come down as quickly as yours though. Reducing from 42 to 18 in the space of a month is quite a drop, especially since it seems you still need further reductions! It's amazing that you weren't having very severe hypos given that you have reduced it be 24 units since the beginning of November!

I would say don't worry about it, hopefully you will eventually settle on a stable dose - or maybe even no dose! Now that you are down to 18, I would suggest getting a pen that does single units if you don't already have one, so that future reductions can be one unit at a time rather than two. Keep us updated! 🙂

 

[everydayupsanddowns]

What I find *very* interesting Gill is that the rapid reduction coincides with the switch to a new pen. Not that necessarily the old one had degraded/become underactive, but it could well be part of the picture.

Personally I find I usually have to tweak my basal every few months. Often I can't really see what the underlying reason for the new requirement is, otehr times it's quite obvious.

In short your cyclical journey through increasing and then decreasing doses doesn't really surprise me - and if you are checking those changes with an occasional basal test then I would just keep going.

I'm just a few steps behind you actually... Since August my basal patterns have gone up and up, at first gradually, then more severely... and in the last week I've been more stable and seeing some unexpected lows where I *know* my carb counting was spot on which suggests the goalposts have probably shifted again.

Hope you lose some of those hypos soon - waking ones are horrid.

 

[bennyg70]

Northener - How did you come to stop the basal, or take that desision? Have you found youve had to change your bolus's patters, injection times, ratios, to compensate?

How long have you been on no basal? And do you think you needed the small amount of basal when you were on it? (Or would you have also of been better controlled without it at that time?)

 

[Northerner]

Northener - How did you come to stop the basal, or take that desision? Have you found youve had to change your bolus's patters, injection times, ratios, to compensate?

How long have you been on no basal? And do you think you needed the small amount of basal when you were on it? (Or would you have also of been better controlled without it at that time?)

I'd been reducing down from 4 to 1 unit because I was still waking in the low 4s, so I decided to try without the 1 unit. I was (and for the most part have been) very stable overnight e.g. last night I was 5.5 before bed and woke to a 5.2 this morning 🙂 I do have a slightly increased bolus in the mornings when either I am more insulin resistant or my liver is releasing extra glucose (or both), but the rest of the day I am fine. In fact, when I am in regular training (I am a runner) my bolus requirements also come down considerably. I stopped the lantus in April and since then have just had a few occasions when I've had a couple of units to help me when I have had slight illnesses.

I did need the basal at the time, it's just that my need for it reduced and reduced until I could reduce it no further. My consultant doesn't think one unit would have been making any difference anyway. Clearly, my pancreas is still working, at a reduced level to a healthy one, but appears to be able to cope with my basal requirements if not my meals 🙂

 

[mum2westiesGill]

I would suggest getting a pen that does single units if you don't already have one, so that future reductions can be one unit at a time rather than two. Keep us updated! 🙂

The pen I've got is the ClikStar 1-80u - in single dose units.

What I find *very* interesting Gill is that the rapid reduction coincides with the switch to a new pen.

I was using the blue Autopen 24 and it was a new one of these which I changed to on the 2nd Nov.
Then on around the 12th Nov I started using another new pen which is the one I mentioned in the reply above. This was because my DSN said they don't very often give out the Autopen 24 now. So another new pen and still low BS.

 

[Phil65]

I'd been reducing down from 4 to 1 unit because I was still waking in the low 4s, so I decided to try without the 1 unit. I was (and for the most part have been) very stable overnight e.g. last night I was 5.5 before bed and woke to a 5.2 this morning 🙂 I do have a slightly increased bolus in the mornings when either I am more insulin resistant or my liver is releasing extra glucose (or both), but the rest of the day I am fine. In fact, when I am in regular training (I am a runner) my bolus requirements also come down considerably. I stopped the lantus in April and since then have just had a few occasions when I've had a couple of units to help me when I have had slight illnesses.

I did need the basal at the time, it's just that my need for it reduced and reduced until I could reduce it no further. My consultant doesn't think one unit would have been making any difference anyway. Clearly, my pancreas is still working, at a reduced level to a healthy one, but appears to be able to cope with my basal requirements if not my meals 🙂

Either that or you are not eating anything Alan! 😉

 

[trophywench]

Right Gill, how about this for an explanation? Obviously I have no idea if it applies or not, just thoughts.

You were diagnosed. Your pancreas, fed up of struggling, had gone on strike. You took over its job by injecting Lantus.

It's had a rest. Now it's producing insulin again. But you don't know how much or when.

Do you know for a fact it ain't T1.5? cos that's exactly what it sounds like to me. Extended homeymoon period, sporadic and unpredictable influx of endogenous insulin production.

What does the team think?

 

[Northerner]

Gill has been diagnosed for 20 years TW, that would be a heck of a rest! 😉

 

[mum2westiesGill]

Hi trophywench,

But I've been diabetic type 1 for 20 years!

Thanks for your explanation though.

 

[Northerner]

Might explain me though TW 🙂 Certainly it's what I have been thinking - when diagnosed I had a virus that my pancreas just couldn't cope with, but now it's recovered a bit.

 

[trophywench]

Oh bugger LOL - sorry Gill. Got you entirely muxed ip in my head with someone else.

Although maybe you're going to be one of the Joslin babes, you know the ones, in their 70s and 80s, been T1 since well before the last King popped his clogs and still have some of their own insulin production? LOL

(Who on this board wouldn't offer to pay for a C-peptide test if they were available privately? I know I would, I'd love to know.)

And to Alan, Yup, I think so! though I think you had the test, or have I mis-remembered that too?

Gill my revised advice is, just keep reducing it and be thankful LOL

Oooooooooooooooooo, just thought - lumps of previously undigested Lantus?

 

[Northerner]

No, haven't had the test - consultant said that whilst it would be interesting to know it wouldn't change my treatment and therefore can't be justified on cost

Perhaps lantus is actually the cure we've all been looking for and me and Gill have the alpha gene that makes it worl on us quicker? 😉

 

[trophywench]

Didn't cure me LOL

 

[MaryPlain]

My basal total is just under 10 units, reduced from a maximum of 24 when I was on Lantus about 10 years ago.

Don't worry, it's great that you keep adjusting and eventually you will get stable again I'm sure!

Have you considered pumping? I could never get predictable results with Long acting insulins - unnatural!