Author Topic: starting Toujeo  (Read 394 times)

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Offline nytquill17

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starting Toujeo
« on: 04 January 2018, 08:11:33 PM »
Since I started at the new clinic, they have been really keen to get me off Levemir and onto Toujeo, apparently they are seeing overall better results with it. I suspect that the pharma company sales reps also have a hand in painting a glowing picture of it, but even if that's the case the only way to know for sure what it does for ME is to try, right?


I admit that, given my tribulations with Lantus in years past, I was reluctant to try what is technically just a reformulation of the same...but I also had a good think about it. I feel like this new team I have is really on my side, and while on the one hand I still do really think that the solution to most of my diabetes-related problems is to eat less carbs than I am currently eating, fact is that I have had the best intentions for years to eat less and it hasn't happened. I am here, now, eating that many carbs, so maybe even though less carbs is "the solution" it's not the solution for ME, at least not at this stage in my life doing a PhD and all. Me refusing to try anything else so long as I haven't got the carbs down is just a case of letting the perfect get in the way of the good, no? And what good is having a team that's truly on my side this time, if I refuse everything they suggest?


So I told them my reservations and they've given me a few pens to start with so I can see on a trial basis how I get on, so if it doesn't work out in the first couple of weeks/months I just go back to refilling my Levemir as normal. Meantime I have a repeat prescription on hand for the Toujeo if all goes well and I want to continue with it. And if it's a total disaster further down the line I don't think they'll be very obstructionist about letting me move to something else. I'll be starting tonight on a very conservative 22u but they have given me free reign to increase it until either my FBG hits 7.0 or I reach 45u. I also have phone numbers and emails to stay in touch between appointments if I need anything. Fingers crossed I see all these glorious improvements they've been trying to sell me on! ;)
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Online Pattidevans

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Re: starting Toujeo
« Reply #1 on: 04 January 2018, 10:57:17 PM »
What a marvellous opportunity Nyt.  I wish you so much luck and I am so pleased you have at last got a great team behind you. I've always felt for you and the struggle you have to balance life and diabetes whilst having the busy time you are with your studies.   Please will you keep us all apprised of how it goes?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.


© 2015 Patti Evans

Offline Liam

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Re: starting Toujeo
« Reply #2 on: 05 January 2018, 09:12:07 AM »
Hope it works out. We can never really guess with these things, you really do have to jab it in and see what the meter says!

I know what you mean about focusing on one thing and letting it stop you do anything else. I can be bad with that and not just diabetes wise! At least you are aware of it, that is half the battle in changing.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Online Pattidevans

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Re: starting Toujeo
« Reply #3 on: 05 January 2018, 09:42:05 AM »
I think Lucy has been on Toujeo, is it the same as Tresiba?
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.


© 2015 Patti Evans

Offline himtoo

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Re: starting Toujeo
« Reply #4 on: 05 January 2018, 10:58:14 AM »
hope it goes well for you Nyt !!
I am sure you will keep us updated :)
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 06/2013 6.1 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Online Pattidevans

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Re: starting Toujeo
« Reply #5 on: 05 January 2018, 02:45:29 PM »
Just googled and answered my own question... no they are two different basals, not the same thing with another name on the other side of the Atlantic.

Nyt.. some interesting stuff regarding how people get on with Toujeo comes up if you google "Diabetes blog re: Toujeo" which I did because in the back of my mind I remembered quite some time ago reading a very good account of what happened to one person.   It's the first blog on that page of the link I gave.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.


© 2015 Patti Evans

Offline Quantum Learning

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Re: starting Toujeo
« Reply #6 on: 06 January 2018, 02:48:24 AM »
I think I might be the only person on the forum using Toujeo? I've been looking back thru my posts & it seems I've been using it since around August 2016. I had an awful allergic reaction with Levemir & the DSN said we'll switch you to Lantus but as I was injecting around 100 units (& still rising) of the Levemir, she said try this Toujeo as it's just a more concentrated form of Lantus.
I now inject 80 units in 2 injections at the same time at night. I have to say it does seem a little erratic though. Sometimes my BG's are running too high generally and I start to think about increasing it but then they'll drop right down & I think thank goodness I didn't increase it. :o
I've had some unexpected hypos though, the latest were 2 at about 7am, most unexpected and no reason for them that I could see. Also it does burn sometimes but I was expecting that as it's Lantus and it doesn't burn every time. I have also put on 28lb with no change to my diet but this coincides with zero exercise for over a year due to my neck problems so who knows?
As you're much more experienced than me with insulin hopefully you'll be able to 'see' patterns better and I hope you find it works well for you but reading the blog that Patti linked for you, most of the peeps there seem to have trouble with it. On the other hand maybe the peeps it works well for just don't post about it? Good luck anyway  :)
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9%
Jan 2018 51/6.8% Chol 5.9
Metformin SR 2000mg, Doxazosin 3mg, Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir

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Re: starting Toujeo
« Reply #7 on: 06 January 2018, 09:16:50 AM »
Quote
Maybe the peeps it works well for just don’t post about it


That’s very true about anything!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.


© 2015 Patti Evans

Offline nytquill17

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Re: starting Toujeo
« Reply #8 on: 06 January 2018, 03:16:24 PM »
I did do some looking around and found that blog too, and plenty of other reports of people finding it to be wildly unpredictable, so I definitely don't have high expectations. Although of course I live in hope that the positive hype is NOT just a marketing thing and perhaps I will see better results with it...but only time will tell!

And I saw that it is basically just a way for Sanofi to try and reassert a new patent as the patent for Lantus is expiring, and that some of their claims about what it does better or different than Lantus are not clearly demonstrated (i.e. in the European - and I think Canadian - marketing materials they say that it causes fewer hypos, but the same results were interpreted in the US as showing no significant difference). IOW it sounds like they were hoping to show it was a radically different formulation of insulin, and to market it to patients and prescribers as such, and that didn't quite pan out. But I figure better to find out for myself, and at the same time it makes me seem less stubborn with my team if I don't say no to just everything! I definitely would not have agreed to try it had I not felt that this team does really put ME at the centre of things such that if I tell them/show them I'm having a horrible time with it after doing due diligence and want to go back to Levemir they won't prevent that happening.

Frankly I find it very suspicious that most diabetics I know who have tried different basals seem to generally prefer Levemir whereas almost every doctor I have spoken to has said basically that Levemir sucks, their patients don't get good results with it and wouldn't I prefer something else? It really smacks of some very persuasive campaigning on the part of representatives of other drug companies.
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline Quantum Learning

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Re: starting Toujeo
« Reply #9 on: 06 January 2018, 04:54:55 PM »
Quote
Frankly I find it very suspicious that most diabetics I know who have tried different basals seem to generally prefer Levemir whereas almost every doctor I have spoken to has said basically that Levemir sucks, their patients don't get good results with it and wouldn't I prefer something else? It really smacks of some very persuasive campaigning on the part of representatives of other drug companies.

You may well be right. When I first went on insulin the GP said ok I'll give you Lantus, I said no thanks I want Levemir because Lantus stings. He was so taken aback & frankly dumbfounded that he didn't tell me anything about how to inject or anything else really. When I got to the chemist she couldn't believe I'd had no instructions or that he'd forgotten to put a sharps bin on the script, so she supplied me with one. I think no one else had ever said no thanks to Lantus & his mindset was so Lantus, Lantus, Lantus he was thrown. Curious hey?
Shame I turned out to be allergic to Levemir, doh!  ::)
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9%
Jan 2018 51/6.8% Chol 5.9
Metformin SR 2000mg, Doxazosin 3mg, Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir

Offline nytquill17

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Re: starting Toujeo
« Reply #10 on: 06 January 2018, 05:18:10 PM »
I remember what a trial you had with Levemir and how distressing it was! I'm glad you have other options that (more or less) work for you.

Another thing I am trepidatious about is going back to a once-per-day insulin. Although I admit it is kind of nice that my morning routine is slightly less involved, it still seems like a step backwards. I expect to have to titrate upwards for a good week or more before I get into the area of fine-tuning, but once I do, what happens if my once-daily dose is right for overnight but not for the afternoon? Or vice versa? I'll have no way to adjust for one without compromising the other, which was one of the things that caused me such problems on Lantus way back when. And they mentioned the flatter profile as a selling point, and while I understand that as a positive point when switching from a VERY peak-y insulin like NPH to a true basal insulin, it seems to me that our insulin needs throughout the day aren't flat at all so why should we be trying to achieve a perfectly flat basal insulin curve? (And the NP on the team is a T1 on a pump so it seems to me that she of all people should know this?) Plus I'm back to the 3-day adjustment period and having to take it at close to the same time every day, both of which were ways that Levemir was more flexible...

Ah but I DID say I was going to give it a fair trial, and look at me complaining!  ;)


So far nothing to report. Started at 22 units night before last, yesterday (following day) was running a bit high all day, which I expected, going from 30u to 22u like that. Especially when the literature shows that people typically need about 30% MORE Toujeo when switching from Lantus (and from Levemir it should be similar) so realistically I probably need about 40u. So last night I was naughty and increased by 2u to 24 to try and speed the process up a bit. And then woke up with a higher FBG today than yesterday! But it's only one day's results; could be a fluke or down to what I ate last night. I'm to email my team on Monday to let them know how I'm getting on so far, but I don't expect I'll have anything spectacular to report by then!
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Offline sedge

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Re: starting Toujeo
« Reply #11 on: 06 January 2018, 08:59:25 PM »
Doesn't Toujeo last even longer than Lantus? - dunno, long time since I read all the bumpf.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline nytquill17

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Re: starting Toujeo
« Reply #12 on: 06 January 2018, 09:55:38 PM »
It's supposed to last 24-30 hours. So there is a potential for overlap, but on the other hand it would be overlap of the "ramp up" of the new dose and the "trail off" of the previous dose, so it may actually make for a fairly smooth transition.

My body never did do anything it was supposed to with Lantus. It was supposed to last 24 hours, they now admit it lasts more like 20 for most people - for me it was 16! People did report having hypos on Lantus 2-3 hours post-injection, in some cases 5 hours - for me it was 7 hours like clockwork! So the Toujeo action profile in my actual body could be...just about anything!
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."

Online Pattidevans

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Re: starting Toujeo
« Reply #13 on: 06 January 2018, 10:47:12 PM »
Oooh Nyt, I did not mean to discourage you or run down Toujeo.  I just thought it worth alerting you to other’s experiences.  You have to assess it for yourself and I do wish you luck.  To be honest nothing but a pump could ever have addressed the rhythm of my insulin needs.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 Sept 2017.


© 2015 Patti Evans

Offline nytquill17

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Re: starting Toujeo
« Reply #14 on: 07 January 2018, 12:16:46 AM »
Not at all Patti! It's nothing I hadn't already considered! I'm not discouraged, just waiting to find out whether it will suit my body chemistry or not. I pretty much expect not, all things considered, but I have to give it a fair shot and see. If I'm right, my team and I can cross this off the list of things to try and move on to the next thing, and if I'm wrong, then I'll be pleasantly surprised, so either way it's a step forward!
T1 DX 1995
Levemir + Novorapid
 
  ~-~-~-~
"If you can't ride, can you fall?"
"I suppose anyone can fall," said Shasta.
"I mean can you fall and get up again without crying, and mount again and fall again and yet not be afraid of falling?"
"I - I'll try," said Shasta.
  ~C.S. Lewis, The Horse and His Boy
  ~-~-~-~
"There is no answer; seek it lovingly."