Switching to Toujeo

[Rosiecarmel]

Thanks @mikeyB i appreciate the advice. I'm definitely going to insist on the allergy test for Tresiba, and if that's a no go then I'll push for a pump. Just don't understand why I can be OK on basal/bolus for 20+ years without issue (including during a pregnancy) and then for it all to go nutty for ansolutely no reason!

Could there be something else going on? Have you had any blood tests done to rule out other physical health problems that could be affecting your diabetes?

 

[Sprogladite]

Sorry love your just weird! 😉 xxxx

LOL takes a weirdo to know a weirdo! Xxxx

 

[Sprogladite]

Could there be something else going on? Have you had any blood tests done to rule out other physical health problems that could be affecting your diabetes?

I have but not for several years now. i suffer with migraines so am on amytriptiline as a preventative, on statins for cholesterol, and on a double dose of cerazette for pcos. So there is other stuff going on, but I haven't noticed anything out of the ordinary if that makes sense!

 

[mikeyB]

I don't think any of your conditions or their treatment will have any effect on your diabetes. Your problem lies with your difficulty in finding a long acting insulin that gives you the control that you need. If Tresiba is a non starter, a pump may be the only answer.

 

[Sprogladite]

I don't think any of your conditions or their treatment will have any effect on your diabetes. Your problem lies with your difficulty in finding a long acting insulin that gives you the control that you need. If Tresiba is a non starter, a pump may be the only answer.

Yes that's my instinct on this too. My other conditions are generally behaving at the moment, so don't think they'd be effecting anything diabetes wise. I'm also in a very stable routine so don't think I'm messing anything up on that front. I will hunt down the Dsn when she returns. Will keep you all updated 🙂

 

[Sprogladite]

Toujeo night 3: had a hypo at 1am and again at 7am this morning. Night 2 must have been a blip!

Edit: running high again today, currently 16.6. Frustrating!

 

[Sprogladite]

Toujeo night 4: again had two hypos over the night, and ran high throughout the day, top reading today was 19.8. Now have it under control thanks to aggressive correcting but the Dsn is gonna get an earful tomorrow morning!!

 

[Robin]

Toujeo night 4: again had two hypos over the night, and ran high throughout the day, top reading today was 19.8. Now have it under control thanks to aggressive correcting but the Dsn is gonna get an earful tomorrow morning!!

I should think so! I really can't see how she thought Toujeo was going to produce any different results from Lantus.

 

[Sprogladite]

I should think so! I really can't see how she thought Toujeo was going to produce any different results from Lantus.

Neither can I anymore but she was very convincing when I spoke to her about it! Shame the sales patter is a load of rubbish isn't it oh well, lesson has been learnt. Listen to the tiny voice who's shouting this is a bad idea! Lol

 

[Sprogladite]

Toujeo night 5: I decided to go all out last night and had a pizza. Split my novorapid dose and deliberately under dosed so I went to bed on a 15. Went down to 9ish throughout the night, was 8.3 when I woke up and back up to 14 by the time I got to work. No hypos last night thanks to deliberately forcing myself high, but that being said I still got up twice because I'm paranoid now. Joys. Currently waiting for DSN to call me back...wish me luck 🙄

 

[Sprogladite]

So the DSN just called me back. Her grand solution....reduce Toujeo by one unit. EVEN THOUGH IM HIGH ALL THE DAMN TIME. She basically wants me to see if things settle down over the next few days. Which they won't. She reckons if I have to wake up every night to check my BGs is what I need to do then that's just tough. I honestly feel like crying.

EDIT: Oh, she also banned me from doing corrections so "we can get a clear picture of what your levels are doing without you messing around with them"....I have no words

 

[Robin]

So the DSN just called me back. Her grand solution....reduce Toujeo by one unit. EVEN THOUGH IM HIGH ALL THE DAMN TIME. She basically wants me to see if things settle down over the next few days. Which they won't. She reckons if I have to wake up every night to check my BGs is what I need to do then that's just tough. I honestly feel like crying.

EDIT: Oh, she also banned me from doing corrections so "we can get a clear picture of what your levels are doing without you messing around with them"....I have no words

The NICE guidelines report has a couple,of relevant and interesting observations.
1. People tended to need a higher does of Toujeo ( not a lower dose as your nurse seems to think, the insulin is more concentrated, but the amount of liquid per unit is less, if that makes sense)
2. There was no difference in the number of hypoglaegamic episodes people had.
https://www.nice.org.uk/advice/esnm62/chapter/Key-points-from-the-evidence

One thing occurred to me, ( I have trouble with Lantus and overnight hypos) when do you take your Lantus , and how much were you on?
I found when I was taking it at 6pm, I got a surge of insulin around 11pm, just after I'd gone to bed, and my Libre trace looked like a washing line, as it fell towards hypo land at 3am, then rose again towards dawn. Moving it to morning didn't work, because it tended to be running out by the time I woke up, and gave me a huge dawn rise. I now take it at 1pm. The surge happens at 4pm when I'm quite happy to have a biscuit anyway, and if it starts running out, it's late morning when I can keep an eye on my levels. (I'm still tempted to try Levemir, because I'm only on 5 1/2 units of Lantus at the moment, and it has a reputation for being less stable in low doses.)

 

[Sprogladite]

The NICE guidelines report has a couple,of relevant and interesting observations.
1. People tended to need a higher does of Toujeo ( not a lower dose as your nurse seems to think, the insulin is more concentrated, but the amount of liquid per unit is less, if that makes sense)
2. There was no difference in the number of hypoglaegamic episodes people had.
https://www.nice.org.uk/advice/esnm62/chapter/Key-points-from-the-evidence

One thing occurred to me, ( I have trouble with Lantus and overnight hypos) when do you take your Lantus , and how much were you on?
I found when I was taking it at 6pm, I got a surge of insulin around 11pm, just after I'd gone to bed, and my Libre trace looked like a washing line, as it fell towards hypo land at 3am, then rose again towards dawn. Moving it to morning didn't work, because it tended to be running out by the time I woke up, and gave me a huge dawn rise. I now take it at 1pm. The surge happens at 4pm when I'm quite happy to have a biscuit anyway, and if it starts running out, it's late morning when I can keep an eye on my levels. (I'm still tempted to try Levemir, because I'm only on 5 1/2 units of Lantus at the moment, and it has a reputation for being less stable in low doses.)

I was on 28 units originally, and then reduced down to 24 which meant I was really high all day and still having night time hypos. I settled on 26 while waiting to switch to Toujeo, which meant day time ran on the high side (10/11s) but wasn't horror inducing. I took it at 11pm every night, when I go to bed. I take the Toujeo at the same time. I would also head to hypo land at 3am on Lantus, except I will stay there all night if I don't fix it. If I stay in hypo land for several hours and treat when I wake up, I rebound super high (into the 20s). So that's why I've been getting up at 3am and eating a biscuit to try and prevent hypo/rebound. I still get a rise in the morning, but this doesn't kick in until around 8am, by which time I've already had another hypo if I don't get up and eat breakfast.

Nurse suggested moving Toujeo to the morning if dose reduction doesn't help, however her solution was to keep reducing Toujeo (which feels wrong) and using Novorapid to correct high day time levels. Says I will need to adjust my carb counting ratios. I don't see how that works, coz surely my ratio is my ratio?? Correct me if I'm wrong but I don't believe correcting a dodgy basal is what Novorapid is meant to be used for!!

 

[Robin]

Correct me if I'm wrong but I don't believe correcting a dodgy basal is what Novorapid is meant to be used for

No, quite! But if you've run out of all other options, it begins to look attractive! 😱
Switching the time you take your basal might be worth a shot, in case you're getting too much up front in the night. ( they may say Toujeo and Lantus have a flat profile, but....) Other than that, I think MikeyB's suggestion of doing an allergy test to see if you can tolerate Tresiba seems the best bet, followed by an application for a pump.

 

[Sprogladite]

No, quite! But if you've run out of all other options, it begins to look attractive! 😱
Switching the time you take your basal might be worth a shot, in case you're getting too much up front in the night. ( they may say Toujeo and Lantus have a flat profile, but....) Other than that, I think MikeyB's suggestion of doing an allergy test to see if you can tolerate Tresiba seems the best bet, followed by an application for a pump.

Lol I asked about the allergy test this morning and got fobbed off, she said I hadn't given Toujeo a 'fair chance'...well no, strangely enough I'm not willing to sit here with my BGs jumping around all the time. Odd that! I am most likely going to end up seeing a consultant privately, I have just had enough now. The DSN banned me from correcting at all, says she needs to be able to see what is going on with just basal + carb counting. Pre lunch was 6.7, now 11.2 and rising according to the libre...this is gonna end so well...

 

[Sprogladite]

Toujeo night 6: Not entirely sure what changed last night but this was the first night where I had a consistent BG level through the night (between 8 - 9 all night). It did start falling around 5am and I woke to a 6.8, so all in all not bad. However my usual morning spike didn't happen (or so I thought) - waited an extra 30 mins for it to happen, nothing. Of course the moment I injected for breakfast (not counting any spike potential), I of course started shooting up. Now sitting at 12.8 pre breakfast wondering what my body is doing lol 🙄

 

[Rosiecarmel]

Toujeo night 6: Not entirely sure what changed last night but this was the first night where I had a consistent BG level through the night (between 8 - 9 all night). It did start falling around 5am and I woke to a 6.8, so all in all not bad. However my usual morning spike didn't happen (or so I thought) - waited an extra 30 mins for it to happen, nothing. Of course the moment I injected for breakfast (not counting any spike potential), I of course started shooting up. Now sitting at 12.8 pre breakfast wondering what my body is doing lol 🙄

Good news about staying steady over night! You can generally tell if your basal insulin is correct if you stay steady over night so not sure I would reduce it any further. Maybe tell your DSN that!

 

[Sprogladite]

Good news about staying steady over night! You can generally tell if your basal insulin is correct if you stay steady over night so not sure I would reduce it any further. Maybe tell your DSN that!

Yes, I agree. I'm going to stick to 23 units tonight and see if I get the same result or if it was a fluke lol. Although I have been much steadier today generally, apart from the blip this morning up to 12.8 I have been under 10 all day so far for the first time in forever! 🙂

 

[Sprogladite]

Toujeo night 7: I did 23 units again and this time I descended very slowly overnight until about 5am where I plunged into hypo land. Fixed that, came to work, usual spike is happening but only up to 11.2 this morning and coming back down now the novorapid is kicking in. Still undecided about lowering the toujeo dose, theoretically it could help stop the night time hypo but practically I'm running higher in the day that I want to be and I don't want to have to be constantly correcting all the time. Hmmmmm I'm thinking I may just have to ride this out for a few weeks after reading one of the studies done with toujeo, where it took something like 4 weeks for things to completely stabilise 🙄 would like this to be sorted ASAP as I'm going to america in 5 weeks but I guess all I can do is observe and hope for the best! It does seem more stable recently, the last couple of nights especially. I still don't understand how this is different to lantus though!

 

[mikeyB]

It isn't different to Lantus, as both I and other folk have said. Your DSN is only repeating sales guff from the Sanofi Rep. You can try it for four weeks if you like, or if you like going hypo, but I don't think it will make much difference. Or at least, no difference that you couldn't make with Lantus. As I said before, your best option would be an insulin pump and just give up playing with long acting insulin.