Toujeo Insulin - BEWARE!!!!!

[CDM9]

Hi guys.

I've been diabetic for 19 years , doing well, little background retinopathy but nothing major to worry about ( I hope!) I'm now 36. My partner is also type 1 ( randomly as well - ha ) he's on Levemir.

So , I tried the new Toujeo insulin ... I was on Lantus before. Like others I had the lows in the night - 18 units caused a low, 17 units too high - seriously it was the bug bear of my life!!!

Try Toujeo he said ( the specialist) oh my god I loved Toujeo ... for like 3 months. Then I started with major highs. I am talking going to bed at 4.8 and waking up at 20 in the middle of the night for the last five days. What the hell, what the hell. Lantus never did this to me even though it's still ****** me off

I tried everything - it must be a bad pen, I must change injection sites, what have I eaten, am I sick?? , I must exercise more ??

Jesus people - high levels are F ing horrendous and I felt sick as a pig - it's never happened to me for a prolonged period ( don't get me wrong I go up to 15-ish often before correcting , but that doesn't seem to affect me as much) .

I knew something was wrong and I started to worry that after 19 years of pretty stable management it was my time....

Low carb Day, regular shots, levels were still soaring at night and late afternoon. So I have gone back to Lantus...

It's day one let's see what happens. However, I know it's a new insulin and there's not much research on the outcomes but my conclusion is it's pretty pretty ****. Google tells me I am not the only person who has experienced this. This panics me for newbies diagnosed who they put on it from the outset?!

I Would be really interested in other people's experiences. I will feed back to my consultant in January but I'm quite worried about the whole Toujeo situation!!! Who can we tell????

Last night my partner woke me up at 3am having a 2.2 low and there I was at 20..... we live in a crazy crazy world!

 

[himtoo]

great post of your experiences @CDM9
hopefully we will get some more toujeo users on to report .

 

[Jaylee]

Hi,

Don't know nothing about Toujeo...

But you have a partner T1 as well..?!? Fair play...! (I applaud you.)
Seriously, I don't think I could hack it if my wife was a D...

 

[CDM9]

Yep .... never met another type 1 adult in my whole time ( met a few children). This seriously hot guy walked into a bar one night, we laughed , we joked and had a good chat... then he announced he was type 1 .... I kid you not!!!

We have shares in lucozade and Jelly babies , every cloud

 

[Jaylee]

Yep .... never met another type 1 adult in my whole time ( met a few children). This seriously hot guy walked into a bar one night, we laughed , we joked and had a good chat... then he announced he was type 1 .... I kid you not!!!

We have shares in lucozade and Jelly babies , every cloud

So you were the last to "hold out" on the D confession...?
I only met D adults in my youth.. They seemed to do alright with "norms"...

Lol, I was asked to "stay the night" & requested some "quick drive time" to grab my Glargine... (Basal.)
Rather worried, she thought it was something beyond her "boundaries". Then looked rather relieved when I explained.. (Diabetic meds.) not some sort of kinky performance enhancer....
I'm a gentleman.. Not so cocky as to carry my Lantus about in the "event" I should get lucky...

Over 20 years later... Still lucky!

 

[KezG]

I've been using Toujeo for the last 3 days (I used up all of my first pen which was Lantus).. I'm newly diagnosed and very inexperienced as yet but no problems so far thankfully. That being said.. my nurse says that I may experience some highs in the first week of using it.

 

[SWUSA_]

I tried Toujeo for two weeks and it did not go well at all. I have been on insulin injections for two years. Last month my doctor switched me my prescription from Lantus to Toujeo by calling the pharmacy and just changing it. I found out when I went to pick up my prescription. I made an appointment and she convinced me to try it, saying that she thought it would take care of some DP I was experiencing. I started out at the same dose as I had been taking in Lantus. My control went to heck very quickly-I was having highs, lows, and highs again in an unpredictable pattern-my doctor suggested it takes time to adjust so I stuck the course for 13 days. On day 14 my blood sugar went up to 260 and then 285-it would not come down for 48 hours with exercise, not eating, eating-after 48 hours I took a shot of Lantus and my blood sugar was down into range within 3 hours. I called and let my doctor know what had happened and she put me back on Lantus. I have not experienced that instability in Blood sugars on any other medication. Toujeo did not work for me.

 

[tim2000s]

@CDM9 PLease report your experiences via the MHRA yellow card scheme if you are in the UK.

 

[Lynz84]

Hey. Ive been on toujeo for 6 months and have found it to b ok! Nowhere near the extremes ppl are talking about. I started gettin highs overnight but that was me not managing he GI of my food correctly. All in all im ok with it

 

[CDM9]

I have woke up at 7 now I'm back on lantus phewy!!!!!!

Yes I'll take a look at that link.

I think Toujeo starts off well then several
Months in changes take affects. Interesting to hear how others who continue to use it for a prolonged period i.e. A year or so find it effects them.

 

[qe5rt]

This is great to hear, i've been having good results with toujeo for the first few months. During the day my BS is stable and i had proper readings at night. But lately and especially the last couple of weeks i've had enormous highs during the night. Same as you went to bed with a good stable value and woke up extremely high. Kept increasing the toujeo but it didn't do anything at all. My HBA1C is higher than usual and all because of these night highs. I feel so bad right now that i can't go to work, my head is bursting, i feel nauseous and tired.

Talked to my diabetes team and they suggested they keep a close eye on me and i have to go to the hospital daily this week. Raised my basal once again but not much effect there. It annoys the hell out of me, the amount of effort i put into controlling my diabetes and it all goes to **** because of these night highs.

 

[tim2000s]

@qe5rt - please also make a Yellow Card report. They are critically important in picking up this kind of thing.

 

[qe5rt]

@tim2000s done.

 

[CDM9]

Terrible! Ask them
To switch you back to lantus!!!

 

[CDM9]

Did you choose defective on yellow card?

 

[iHs]

Does toujeo come in a specific insulin pen? If it does, then it might be the pen that is faulty and not the insulin.

 

[CDM9]

They are disposable pens and defo not that as I tried different ones. Levels are steady and normal today.

 

[SWUSA_]

I tried two Toujeo pens also when I had the 48 hour high-no change.

 

[qe5rt]

Apparently Toujeo has the tendency to clog up the needle more than any other insulin, they suggest ejecting 3 units with force before injecting. I'm on Toujeo for the rest of the month, by the end if there's no change i'll ask for a change to lantus again.

It remains odd, during the day i'm stable and barely need Novorapid but during the night it's a whole different story. If the night would remain below 200 mg/dl i'm happy enough, below 150 mg/dl and my HBA1C would be awesome.

They also did a blood panel, no ketones, cholesterol is good oddly though low vitamin D (just barely), no infection, .... I'm otherwise healthy. It did had me worried for a while that there would be something else wrong. Last time they did a blood panel all my vitamins and minerals were in the upper ranges, must be the lack of sun.

 

[qe5rt]

Well i'll be damned ... this morning 121 mg/dl with 28 units of Toujeo and that was the highest point of the night too, went back to sleep for another 2 hours and woke up with 83 mg/dl. Now i just hope it's not a fluke.