Coming off tresiba

[Annette Arundell]

Can someone please advise how to come off tresiba and go back to levemir, as been on tresiba for a week and its awful, highs then lows, and makes me feel unwell, flu like symptoms, diarrhoea, was switched by private consultant as couldn't see NHS one, but now have no support, and can't see private one until June, I just want to go back to levemir , that wasn't great but better than this, I started tresiba on same dose as levemir, and increased it, I had no instructions how to start it, just consultant asking GP to prescribe it, I can wait until June to sort, I went originally to sort reasons for moderate ketones, feeling cold mainly hands, weight loss, which I'm not trying to do, this still not sorted I need to know how to go back to levemir, as its not easy with tresiba lasting so long.

 

[Thebearcametoo]

Remember that tresiba has a long tail and will stay in your system for a few days. I’m so sorry you’ve not had any support through this.

 

[Amity Island]

Can someone please advise how to come off tresiba and go back to levemir, as been on tresiba for a week and its awful, highs then lows, and makes me feel unwell, flu like symptoms, diarrhoea, was switched by private consultant as couldn't see NHS one, but now have no support, and can't see private one until June, I just want to go back to levemir , that wasn't great but better than this, I started tresiba on same dose as levemir, and increased it, I had no instructions how to start it, just consultant asking GP to prescribe it, I can wait until June to sort, I went originally to sort reasons for moderate ketones, feeling cold mainly hands, weight loss, which I'm not trying to do, this still not sorted I need to know how to go back to levemir, as its not easy with tresiba lasting so long.

Hi,

It is a good question and one I'd also like to know the answer to.

This is a link to the official information, there might be something in there about coming off tresiba?

https://www.novo-pi.com/tresiba.pdf

This site is also useful;

Dosing & Starting Adult Patients | Tresiba® (insulin degludec) injection 100 U/mL, 200 U/mL

Learn how to start and convert your appropriate type 1 diabetes and type 2 diabetes patients over 1 year of age to once-daily Tresiba® (insulin degludec). Read Important Safety and Prescribing Info.

www.tresibapro.com

I will have a look and get back to you tomorrow if I can see anything of any use to you. As you may know, it's basically a 48hr insulin but I think it will have a half life so after 24hrs after last dose I'd expect to start seeing a reduction in it's effectiveness and for that time between 24hrs and 48hrs it may need supplementing with either fast acting every 8hrs or so or partially some other basal like levemir. Really could do with speaking to a specialist consultant as he may have patients who have come off it and know exactly how to deal with it, but I understand your situation.

 

[Lucyr]

When I changed from tresiba to lantus I just switched over at my usual dose, but do test more and watch out for hypos for a couple of days, or reduce bolus whilst the tresiba runs out.

 

[Annette Arundell]

Hi,

It is a good question and one I'd also like to know the answer to.

This is a link to the official information, there might be something in there about coming off tresiba?

https://www.novo-pi.com/tresiba.pdf

This site is also useful;

Dosing & Starting Adult Patients | Tresiba® (insulin degludec) injection 100 U/mL, 200 U/mL

Learn how to start and convert your appropriate type 1 diabetes and type 2 diabetes patients over 1 year of age to once-daily Tresiba® (insulin degludec). Read Important Safety and Prescribing Info.

www.tresibapro.com

I will have a look and get back to you tomorrow if I can see anything of any use to you. As you may know, it's basically a 48hr insulin but I think it will have a half life so after 24hrs after last dose I'd expect to start seeing a reduction in it's effectiveness and for that time between 24hrs and 48hrs it may need supplementing with either fast acting every 8hrs or so or partially some other basal like levemir. Really could do with speaking to a specialist consultant as he may have patients who have come off it and know exactly how to deal with it, but I understand your situation.

Thank you any help is welcome, I just can't stand this i don't seem to get any support

 

[Supratad]

When I changed from tresiba to lantus I just switched over at my usual dose, but do test more and watch out for hypos for a couple of days, or reduce bolus whilst the tresiba runs out.

Yes, basically that. I switched from Tresiba to Levemir but as my bloods were consistently high, any overlap of Basal insulins didn't have any noticeable effect.
Unfortunately, the Levemir made my injection sites swell up so I stopped it pretty quickly and went to Lantus.

 

[Annette Arundell]

Well everyone I rang Diabetic support team and emailed my consultant for support coming off Tresiba and returning to Levemir, I have no response from anyone, so desperate now, how do i adjust doses to go back on Levemir without going Hypo or Hyper? As I have this problem now sugars high all the time on Tresiba, loads of NovoRapid to correct, even giving me high blood pressure, think my body will pack in as I've had problems for months, with no support given, thats why I went private and ended up with Tresiba, which is a total night mare, as no advice given to me on how to take or taper off Levemir, I just went from one to the other, so if there is anyone out there that can offer me a plan to go back to Levemir please help.😱

 

[rebrascora]

What time of day are you taking the Tresiba and when have you been having hypos with it? And when do you go high?.... Just trying to get some idea of your basal needs throughout the day and night to figure out when might be the best time to make the switch...... So for instance with me, I need lots more basal insulin in the morning but almost none during the night, so I would look to make the switch with an early morning injection of Levemir if I was taking the Tresiba at night but maybe not the full dose of Levemir because there will be overlap with the Tresiba. Or if I was hypoing overnight on the Tresiba, I would reduce the dose of that the night before I changed and then have the full Levemir dose the next morning.

Were you on split dose Levemir before the swap and were you adjusting your doses as necessary. Some people seem to think that the Levemir needs to be taken in identical doses morning and evening when in fact it should be adjusted to the individual needs which often isn't a 50/50 split. Also, sometimes adjusting when it is taken, rather following the guidance of 12 hours apart can be helpful if you understand how it works, but you really need to give that some thought. So for instance, for me, I currently take 22units of Levemir at 7am and tonight I will be taking just 2 units at 11pm and this should keep me pretty much level with my current basal needs but that could change in a week's time and I may need more or less at night. Levemir is great because it is so flexible that you can adjust it to your needs whereas Tresiba just gives you a constant trickle of the same amount of insulin day and night. Many people's bodies don't work like that and they need more or less at different times of the day. Getting your basal insulin type and dose right is a "dark art" and needs quite a bit of thought. Much more so I think than Bolus insulin which is a fairly straightforward calculation.
I hope that makes sense. If you can give us a bit more info about when you are going high and low and if there is any sort of pattern then that will help to advise you on the best time to do the swap and how we might go about it personally. We can however only say what we would do in those circumstances and not what you SHOULD do.

As others have said you will need to be very vigilant with testing for several days during the transition.
Do you have Freestyle Libre or are you relying on finger pricks? If you don't have Libre, I would get one to tide you over the transition to keep you safer and also help you understand your basal needs better. Many of us self funded before we eventually got them on prescription and they are a game changer when it comes to getting your basal doses right.

 

[Annette Arundell]

What time of day are you taking the Tresiba and when have you been having hypos with it? And when do you go high?.... Just trying to get some idea of your basal needs throughout the day and night to figure out when might be the best time to make the switch...... So for instance with me, I need lots more basal insulin in the morning but almost none during the night, so I would look to make the switch with an early morning injection of Levemir if I was taking the Tresiba at night but maybe not the full dose of Levemir because there will be overlap with the Tresiba. Or if I was hypoing overnight on the Tresiba, I would reduce the dose of that the night before I changed and then have the full Levemir dose the next morning.

Were you on split dose Levemir before the swap and were you adjusting your doses as necessary. Some people seem to think that the Levemir needs to be taken in identical doses morning and evening when in fact it should be adjusted to the individual needs which often isn't a 50/50 split. Also, sometimes adjusting when it is taken, rather following the guidance of 12 hours apart can be helpful if you understand how it works, but you really need to give that some thought. So for instance, for me, I currently take 22units of Levemir at 7am and tonight I will be taking just 2 units at 11pm and this should keep me pretty much level with my current basal needs but that could change in a week's time and I may need more or less at night. Levemir is great because it is so flexible that you can adjust it to your needs whereas Tresiba just gives you a constant trickle of the same amount of insulin day and night. Many people's bodies don't work like that and they need more or less at different times of the day. Getting your basal insulin type and dose right is a "dark art" and needs quite a bit of thought. Much more so I think than Bolus insulin which is a fairly straightforward calculation.
I hope that makes sense. If you can give us a bit more info about when you are going high and low and if there is any sort of pattern then that will help to advise you on the best time to do the swap and how we might go about it personally. We can however only say what we would do in those circumstances and not what you SHOULD do.

As others have said you will need to be very vigilant with testing for several days during the transition.
Do you have Freestyle Libre or are you relying on finger pricks? If you don't have Libre, I would get one to tide you over the transition to keep you safer and also help you understand your basal needs better. Many of us self funded before we eventually got them on prescription and they are a game changer when it comes to getting your basal doses right.

Hi I take it at midday now, but started it on morning routine. I get high numbers all day, they get higher as I get up in morning, needing correcting with NovoRapid before breakfast. And this goes on all day correcting, then I get hypo, then after correcting go higher again, so its a vicious circle I'm in. The dose I'm on is 15 units a day, which I could up, but takes 3 days to change? Thats why I'm confused how to change back because it last so long. When I was on Levemir I took 10 units in morning and 6 at night, I wanted to move night dose later like you but when I tried it, the morning dose had run out and I was going higher, I did have few hypos with Levemir at night, but in morning was rising as I got up the same as now on Tresiba. I thought Tresiba would be a good idea as just once a day, and seemed steady on the write ups. I have got Libre 2 which is brilliant thats how I know all is not well, and I double check with glucose monitor, I contacted DN & Consultant and told them I was desperate for information on how to change back, but heard nothing. I ended up on Tresiba after seeing a private consultant as could not see or speak to NHS one who I have rang and emailed now. I also tried to reach private one , I was told he was going to ring me, but that was 2 days ago, so thats not happening. What has happened why is there no support out there from them.

 

[rebrascora]

The rise in the morning is likely due to Dawn Phenomenon (DP) or Foot on the Floor (FOTF) syndrome. This is very common and many of us need to inject extra quick acting insulin as soon as we wake up to try to catch it before it goes too high. For me I inject 1.5-2 units of QA insulin plus whatever I need for breakfast (if I am having any) plus any correction for my waking reading. And that all goes in before I get out of bed. Then I used to have to wait about an hour for the Novo(not so)Rapid to kick in or 45 mins for the Fiasp I am now using, before eating my breakfast. This is excessive prebolusing so I am not suggesting you try waiting an hour between injecting and eating breakfast yourself, but it is worth experimenting with carefully increasing the prebolus time by 5 mins each day to find your sweet spot. Most people find they need longer on a morning for insulin to work than other meals otherwise they go too high before the insulin kicks in and then it becomes less effective at higher BG levels. Apologies if you are aware of all this already.
So it may be that you can solve your problems with Tresiba by injecting NR earlier before you get out of bed and using an extra unit or 2 to cover DP and waiting longer before you eat breakfast and keep an eye on your Libre so that you can see when the insulin starts to bring your levels down and start eating then. Also, best not to eat when your levels are above 8. That info may help to iron out some of the turbulence with Tresiba, but if you are determined to go back to Levemir. I would take the normal Tresiba dose the lunchtime before I was going to change and then maybe half your previous dose of Levemir the next morning (since it will be overlapping with the Tresiba) and depending upon how your levels went through the day perhaps 2/3 or if you were low in the afternoon just 1/3 of your normal evening dose of Levemir in the evening and then up to full doses the next day..... with lots of monitoring.... but having Libre 2 will hopefully keep you safe.

That is what I would do but I would adjust that plan as I went along depending upon my Libre readings. You are better to be too high for a few days than having nasty hypos so reduce the Levemir dose a couple of units until the Tresiba is fully out of your system. Then start working on finding a way to make the Levemir work as well as possible for you.

That is just how I would go about it.

 

[Annette Arundell]

Thank you for your help 🙂

 

[Lucyr]

If I was high all the time on tresiba and wanted to switch to levemir, I’d probably make the switch at my desired levemir time, but then for the next few days avoid or vastly reduce my correction doses, since it sounds like after correcting is when you go low.

 

[everydayupsanddowns]

Sorry to hear how you have been struggling @Annette Arundell

Have you tried calling the Diabetes UK helpline (number at the top of the page if you are on a laptop or tablet)? It is open Monday-Friday 9-6, and I believe they may be able to refer you on for some clinical support if you have been struggling to access your clinic during the pandemic.

 

[Annette Arundell]

Thanks, I have now got a face to face appointment with my nhs consultant, after I rang and emailed diabetes team in a state, the DN rang me and told me consultant said I be better going back to to Levemir, so Im in the process of swoping back, with loads of highs I havent seen my consultant for 18 months, and I've got loads of on going problems, still with ketones, which you messaged me about at time, when I posted before, I did pay for a private appointment at Nuffield to see another consultant, who suggested tresiba, but that didn't work well, made me very unwell, so hoping at some stage I will be sorted, than you for replying.

 

[Amity Island]

Thanks, I have now got a face to face appointment with my nhs consultant, after I rang and emailed diabetes team in a state, the DN rang me and told me consultant said I be better going back to to Levemir, so Im in the process of swoping back, with loads of highs I havent seen my consultant for 18 months, and I've got loads of on going problems, still with ketones, which you messaged me about at time, when I posted before, I did pay for a private appointment at Nuffield to see another consultant, who suggested tresiba, but that didn't work well, made me very unwell, so hoping at some stage I will be sorted, than you for replying.

Hi Annette,

Would you be able to share the advice you get about coming off Tresiba, I'd like to know what they recommend.

Thanks

 

[Annette Arundell]

Hi Annette,

Would you be able to share the advice you get about coming off Tresiba, I'd like to know what they recommend.

Thanks

When I spoke to DN she told me, to start full dose of Levemir the day after taking Tresiba, but I felt that would be to much as Tresiba stays in system for 42 hrs, so yesterday morning I took half dose of levemir, as I usually take10 units in morning, and full dose at night, (I'm only on 6 units at night) I done regular testing on libre and finger stick, this morning I was 4.8 on waking, then dawn phenomenon came in then 7.1 on getting up, this was now over the 42 hr Tresiba dose, so seemed OK, so I more or less followed suggestion from another forum user, hope this is helpful, I wlill see how I go back on levemir , as I used ro get night hypos in early hrs , then still rise on getting up.