# Tresiba



## Flutterby (Jul 10, 2014)

Hi everyone, sorry I've been awol, been involved with sorting uncles house and also just been on holiday to Minehead which was a much needed break.

Despite my best efforts my control has been rubbish for ages and although the DSN initially thought we could sort it out easily she has now decided that I should try Tresiba - and I start it tomorrow.

I'm really nervous but don't feel there are any other options other than a pump which she says is the next step.

I will let you know how it goes - is anyone else using it?


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## HOBIE (Jul 10, 2014)

I would push for the pump.  24hrs a day insulin ! Once set up for you, you woudnt go back to mdi. If you want to go for a run now. All you would do is reduce basal % & off you go. Now you would have food before/after.


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## Flutterby (Jul 10, 2014)

Thanks Hobie - and you made me smile because me going for a run is about the most unlikely thing in the history of the world haha.  If this doesn't work then she's happy to put me forward for a pump, I just feel sooooo unsure, but one step at a time eh?


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## Redkite (Jul 10, 2014)

Oh yes, another vote for a pump here! . Is Tresiba the 40 hour duration insulin?  Can't see how that could be easy to match to someone's basal needs.  With the pump you can tailor your basal rate hour by hour throughout the day and night.  I'm glad to hear your consultant will offer you the pump, just a shame she seems to look on it as a "when all else has failed" option!


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## Flutterby (Jul 10, 2014)

Yes Tresiba is the 40 hour insulin.  It is supposed to have a totally flat profile (but I've heard that before)  I do know someone who's daughter is using it and is much better and the DSN says that all but a couple of the 40 people locally have improved control since using it.  My total basal now is 17.5 units and she's starting me off on 12 which I'm concerned about but I have to bow to her experience with this insulin and see what happens.  I will inject once a day in the morning.  Thanks Redkite.


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## HOBIE (Jul 10, 2014)

Good luck, I hope it works out & keep us informed how its going


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## everydayupsanddowns (Jul 10, 2014)

If Tresiba works well for folks then great, though I believe the trial data from the manufacturers didn't show any HbA1c improvement over other basal insulins, but just a small reduction in overnight hypos. 

I would give it a go and see how you get on with Tresiba. If it doesn't work well for you, you can always consider pump therapy.

More people seem to get more benefit (lower A1c alongside fewer hypos and generally narrower range of results) with an insulin pump, but everyone is an individual, and some folks just don't like the idea


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## trophywench (Jul 10, 2014)

Well presumably if it lasts that long, you would have to have less daily, cos otherwise on Day 2 onwards, you'd be in hypo hell, wouldn't you?


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## Flutterby (Jul 10, 2014)

Yeah it sounds weird stuff to be honest!  I'm not really looking for a better HbA1c just better day to day quality of life.  I can't get my morning levels sorted and I go up and down like a yo-yo.  This stuff is a miracle folks!!  At least that's what I'm led to believe.  I will let you know!


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## Flutterby (Jul 11, 2014)

Just  a quick update - levels have been pretty similar to any other day so far but it takes a few days to see the effects properly so time will tell.


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## everydayupsanddowns (Jul 11, 2014)

Flutterby said:


> Just  a quick update - levels have been pretty similar to any other day so far but it takes a few days to see the effects properly so time will tell.



Be interested to see how you get on with it Flutterby. It had better be good for 2x the price of the other (hardly cheap!) analogue basal insulins.


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## Flower (Jul 11, 2014)

I hope Tresiba helps you with your control Flutterby. I read an article that suggested approximately a 20-30% reduction of dose compared to other long acting insulins, 17.5 down to 12 units fits in with that. 

It will be interesting to hear if a 40 hour profile helps with your day to day control, here's hoping


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## Austellian (Jul 11, 2014)

Hi Flutterby. I'm interested to hear how you get on too. I was put on Tresiba earlier this year and although my levels were greatly improved (particularly almost eradicating night-time hypos), it wasn't quite as effective as my consultant thought.  I've now been referred for an insulin pump, which I'm almost looking forward to.

But I have to say that of all the insulins I've tried over the years, this one has been by far the most effective - I hope it works out for you.


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## Phil65 (Jul 11, 2014)

Austellian said:


> Hi Flutterby. I'm interested to hear how you get on too. I was put on Tresiba earlier this year and although my levels were greatly improved (particularly almost eradicating night-time hypos), it wasn't quite as effective as my consultant thought.  I've now been referred for an insulin pump, which I'm almost looking forward to.
> 
> But I have to say that of all the insulins I've tried over the years, this one has been by far the most effective - I hope it works out for you.



I have absolutely no doubt your control will improve with a pump......when you have identified your basal profile that you need, takes time......but worth the effort!


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## Flutterby (Jul 13, 2014)

Aww thank you everyone.  The first night I shot up to 17 at 5.30am and despite correction was still 13.6 before breakfast.  Yesterday was much more settled and I had no problems through the night.  I was 9.8 before breakfast which is better.  It remained very flat all morning but I've had to change my lunchtime ratio for the humalog because having hit lows for 2 weeks it's gone manically high again so I'm addressing that too.  I am going to take it day by day through the week and if need be I will ring DSN but I have an appt with her on Friday so am hoping to have a pattern of results to show her then, so that we can consider if the dose is correct.  I will keep you posted.


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## HOBIE (Jul 13, 2014)

Hope it works out for Friday Flutterby


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## Flutterby (Jul 13, 2014)

Thanks Hobie.  Forgot to say that another positive is I'm not getting the local reaction I got with Levemir, 4 years of hard, red, itchy lumps and a few raised eyebrows from docs etc and now there's nothing when I inject - very pleased about that.


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## trophywench (Jul 14, 2014)

The last bits good Karen anyway !

It's amazing how quickly you get used to a pump really.  I admit though I used to say oh yes, best thing since sliced bread, I still actually thought I dunno if I want one.  In terms of being attached to it, kind of like a miniature life support machine, it's a bit medical and frightening.

I still felt like that after I got it.  But by the time a week had passed, it was like part of me.  Really weird.

I instinctively feel for it when I wake up, before I even have conscious thought, so by the time that thought happens, it's already in my hand.

(Which is just as well really since when I wake up normally whatever time it is, that thought is always 'Eeek!  Need the loo!' so I can get out of bed pdq complete with El Pumpo!)


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## Flutterby (Jul 15, 2014)

Thanks for that Jenny, it's easy to say that it's the best thing since sliced bread but nice to hear an admission that you weren't sure at first - I know you've told me that before.

I had a letter yesterday asking me to have blood tests HbA1c plus a few others before or just after starting Tresiba!  Oh well 5 days in will have to do!  Its only for comparison purposes.

My BG's are still changing for the better.  I have to make a few small correction doses at the moment but it's getting less and I genuinely feel better and more energetic.  I shall soon be out running every day just like Northy!!  Maybe I'm running on optimism at the moment, but it's nice and I hope it lasts.

Before breakfast levels have been better so far - 7.4 this morning, I wanted to do a dance but I wasn't that energetic!!  Will keep you posted.


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## jacmarczacc (Aug 26, 2014)

Just been put on Tresiba 200 units flextouch pen.......I'm on 120 units every morning which has confused the heck out of me as the flextouch pen says there's 200 units in the pen and I've got 5 doses out of the pen.. either the pen is a Tardis or I'm not doing it right? I've been dialling so the mark is on the 120 in the window...  will keep at it... at last my morning read is below 9 first time in 15 years, bar the odd occasion now and then so far third morning with a 9 reading in a row


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## Northerner (Aug 26, 2014)

Hi Marc, the confusion is due to the fact that the flextouch pen is 200 units per millilitre (there is also a 100 units/ml version), and each pen contains 3 millilitres. Therefore there are 600 units per pen 

Great to see that it's already showing good results! Tresiba is relatively new, so not many others will be on it yet and it will be interesting if you can share your experiences of it


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## KookyCat (Aug 26, 2014)

jacmarczacc said:


> Just been put on Tresiba 200 units flextouch pen.......I'm on 120 units every morning which has confused the heck out of me as the flextouch pen says there's 200 units in the pen and I've got 5 doses out of the pen.. either the pen is a Tardis or I'm not doing it right? I've been dialling so the mark is on the 120 in the window...  will keep at it... at last my morning read is below 9 first time in 15 years, bar the odd occasion now and then so far third morning with a 9 reading in a row



Well done on getting the morning readings down, should make you feel better as it comes down.  The units are confusing, the first time I went to my Diabetes clinic I told them I'd reduced my mealtime insulin to 3mls and the consultant choked on his cup of tea. I thought he was going to shout at me for tinkering with my dose until he explained that 3 units wasn't 3mls   perked him up though he was still chuckling when I left.


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## jacmarczacc (Aug 26, 2014)

Thanks I will keep everyone advised on how things go with the Tresiba...over time and if I come across any problems.


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## jacmarczacc (Aug 26, 2014)

Why the makers like to confuse insulin users is beyond me, it's bad enough coming to terms with Diabetes.  Then we're having to work out how and what they class as each unit is in each pen... Then as patients we are told by medical staff to take a different set of units in the same pen system and try not make mistakes. It's a pity they cannot put "Each pen contains 3 millilitres. Therefore there are 600 units per pen." This would then save a load of worry or over/under dosages being made.


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## Bessiemay (Aug 28, 2014)

jacmarczacc said:


> Thanks I will keep everyone advised on how things go with the Tresiba...over time and if I come across any problems.


I would be interested to hear how you get on with tresiba. At my last hospital appt doc said he would ask GP to change me over to tresiba as my levels are rather up and down. I stalled because I had about 3 boxes of lantus in the fridge and it seemed a waste.  Do you inject daily?  I don't think I would remember if it was every 3 days.


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## Flutterby (Aug 29, 2014)

Hi Bessiemay, I am on tresiba and inject once a day.

I've been on it for a couple of months now and have had a relatively calm period where I have found my waking levels to be much better and no dawn phenonoman.

the one thing I have noticed is that in a morning I wake at 7.30am and inject the tresiba (11.5 units)  but then I go back to sleep for a while before I wake again and have breakfast.  In that time my BG has dropped 1-2 mmols.  This was quite good when I started using it but if I'm waking on 7 and then it drops to 5 I am slightly uncomfortable with that due to the risk of dropping further and not waking.  It feels a bit of an unknown to me at the moment.

I saw the DSN this week and told her about this and she said Tresiba wouldn't do that and it must be just the way my levels are working, but the thing is that it never happened before.  She wrote it all down as I said to her that with it being new it might be worth recording just in case others start reporting this.

The dose of 11.5 is a reduction that I have made due to this happening but immediately I became quite high - very high at times.  This is not supposed to happen when you change a dose of Tresiba, any changes are meant to take 4-5 days to make any difference.

I am now changing my meal ratios to see if that will give me a flatter profile as I am reluctant to increase the tresiba straight away.

All in all I am mystified but I need to explain that my Diabetes has always been extremely troublesome to control so don't be put off my my experience.


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## jacmarczacc (Aug 30, 2014)

Bessiemay said:


> I would be interested to hear how you get on with tresiba. At my last hospital appt doc said he would ask GP to change me over to tresiba as my levels are rather up and down. I stalled because I had about 3 boxes of lantus in the fridge and it seemed a waste.  Do you inject daily?  I don't think I would remember if it was every 3 days.



Hi Bessiemay...I also only have to inject Tresiba once a day, and that's first thing in the morning and I also inject novorapid 3 x a day (Breakfast, lunch, evening meal)...Tell you what's really is nice, It's waking up everyday with below 9 readings each morning.  Now it's working at having to get the other two readings throughout the day below the 9 mark......

Bessiemay.... I'm well pleased with the swap from Levemir to Tresiba.. It now feels for the first time in ages I'm starting to gain control over my Diabetes instead of it controlling me...take care


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## Flutterby (Aug 30, 2014)

I agree with you jacmarczacc I think Tresiba is very good, I know I'm having problems at the moment but hormones are being blamed for that.  Today I'm having a low day after a high day yesterday.  I love my morning readings being better but I think I am on too high a dose - oh well, time will tell.


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## Bessiemay (Aug 31, 2014)

Flutterby said:


> I agree with you jacmarczacc I think Tresiba is very good, I know I'm having problems at the moment but hormones are being blamed for that.  Today I'm having a low day after a high day yesterday.  I love my morning readings being better but I think I am on too high a dose - oh well, time will tell.


Flutterby and jacmarczakk thank you for your replies it's helpful. I am pleased to hear that you have improvements jac.  Flutterby you seem to understand what's going on so hopefully you will get there. I am so up and down at the moment I will have to give it a try.


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## Matt Cycle (Aug 31, 2016)

Apologies for dredging up an old thread but I've been having similar problems to those described by @Flutterby two years ago.  I saw the consultant at the clinic today and she is putting me on Tresiba.  I'm picking the scrip up from my GP next week.  To those using it do you still see it as the basal problem panacea?  I'm also now on the pump waiting list.


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## KookyCat (Aug 31, 2016)

It's still working very well for me, well in comparision to the horror that was Lantus at any rate.  Weirdly despite its initial marketing as good for those with type 2 it appears to be really good for those of use who are insulin sensitive, because it is freakishly stable, that lack of any peak at all is a godsend for me because I have an uneven basal requirement.  With Tresiba I can go for a midline between my upper basal and lower basal requirement and mediate the issue with the rapid.  Couldn't do that with Lantus because it has such marked peaks it was a horror trying to keep the rapid peak and the Lantus peak apart.  I had to do a complete revision of my bolus ratios though so pretty hard work, because the Lantus protocol required me to under bolus most of the time.  Overall though I'm very happy with it. The only downside is it's expensive and as a consequence I've had horrible issues with the GP surgery refusing to prescribe more than one pen at once, refusing to prescribe cartridges because they can't "split" a box of five, suggesting I don't do an airshot so I can cope with one pen, very wearing and currently the topic of a bit of a scrap, I trust your surgery won't be as bad as mine, because honestly I doubt any other surgery could be quite so bad.


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## Matt Cycle (Aug 31, 2016)

KookyCat said:


> It's still working very well for me, well in comparision to the horror that was Lantus at any rate.  Weirdly despite its initial marketing as good for those with type 2 it appears to be really good for those of use who are insulin sensitive, because it is freakishly stable, that lack of any peak at all is a godsend for me because I have an uneven basal requirement.  With Tresiba I can go for a midline between my upper basal and lower basal requirement and mediate the issue with the rapid.  Couldn't do that with Lantus because it has such marked peaks it was a horror trying to keep the rapid peak and the Lantus peak apart.  I had to do a complete revision of my bolus ratios though so pretty hard work, because the Lantus protocol required me to under bolus most of the time.  Overall though I'm very happy with it. The only downside is it's expensive and as a consequence I've had horrible issues with the GP surgery refusing to prescribe more than one pen at once, refusing to prescribe cartridges because they can't "split" a box of five, suggesting I don't do an airshot so I can cope with one pen, very wearing and currently the topic of a bit of a scrap, I trust your surgery won't be as bad as mine, because honestly I doubt any other surgery could be quite so bad.



Interesting, sounds like a bit of work will be involved but the results are worth it.  I'm just hoping things improve.

So far my surgery seem to do as they are told by the hospital consultants.  So I'm not expecting any problems on that score but I'll have to wait and see.


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