Tresiba Review

[KookyCat]

Hi all

As most know I was using Lantus and having a proper pig of a time with it, no matter what I did with it I just couldn't get it to behave properly. After lots of whinging I was finally given Tresiba to try. I've been using it for a month now so I thought I'd do a bit of a review in case it's useful.

So my main Lantus problem was night time hypos, and resulting insomnia and the second joyful problem was it was not at all flat for me in terms of profile. It was very very peaky. Oddly the more I dialled the dose down the more peaky it became.

I was worried about Tresiba because of the 40 hour duration business, that didn't seem like a great idea because of my nighttime issues but that claim is actually very misleading. There is a complex calculation to use if you want extended duration which I don't yet understand. Essentially it is broken down much more uniformly so you could take a bigger dose and extend the period of action. I have to say I haven't tried that though 😱

So is it stable? Yes incredibly stable, I haven't had an unexpected drop in blood sugar during the day since taking it, nor have I had an unexpected high.

Nighttime hypo reduction? Yes, I've had a couple of events but both were rapid related and because I bolused after 7pm (I get more sensitive at night so the sting in the tail of the rapid gets me).

Unpleasant injection site reactions? None at all, no stinging, bruising or red welts and no bleeding. I had some form of issue every time I used Lantus, although interestingly it stopped stinging when I got below 15 units of Lantus.

Other interesting differences include the complete elimination of the strange episodes of nausea and feeling slightly faint (that nobody could find a cause for), a slight return of the painful neuropathy I got when I switched to Lantus (ear and jaw) no idea why! The intensely dry skin issues I had (fingers were splitting) have gone, and I am no longer frozen the entire time. On that last point I realise it's warmer this time of year but last year I was wearing jumpers in August, now I'd contemplate a tshirt 😉. The problem with peeling lips has also disappeared, could be coincidence but it went about a week after the switch.

Dose wise I'm on 6 units of Tresiba and it works well, I was on 10/11 of Lantus and was up and down like a yoyo. The pen is also be very easy to use with a lovely single click. Would be much easier for those on larger doses, but is also handy (pardon the impending pun) for those of us with nerve damaged hands. All in all its a massive relief to have stability and know that I wasn't going insane, the Lantus really was the main problem. Tresiba hasn't solved all my issues, I'm still super sensitive at night but at least I only have to focus on one problem at night rather than two.

In conclusion Tresiba gets the thumbs up from me

 

[Lindarose]

Hi Kooky I can't pretend to understand a lot of your post but the main thing is that the Tresiba is making an improvement for you which is really good news. You've certainly had your work cut out using Lantus and I'm so glad the change is helping you cope better. Long may it continue 🙂

 

[KookyCat]

Hi Kooky I can't pretend to understand a lot of your post but the main thing is that the Tresiba is making an improvement for you which is really good news. You've certainly had your work cut out using Lantus and I'm so glad the change is helping you cope better. Long may it continue 🙂

Thanks Lindarose

 

[Mrs Mad Ronin]

With me not taking insulin your post didn't make sense to me lol but i got the main thing which was it's an improvement and that is why i am posting. That is fantastic to hear 🙂

*happy dance* - well it deserves it

 

[Robin]

Kooky, I'm really pleased the Tresiba is working for you. I think a lot of doctors swallow the publicity when something new is introduced, ( unless it costs a lot!) and Lantus at the time was hyped up as the best thing since sliced bread. it seems to work for me, but I think doctors fall into the trap of seeing that it's successful in some of their patients, and blaming the patient in the cases where it doesn't work. Well done for persevering and getting them to see sense!

 

[Flutterby]

Hi Kooky, glad to hear that the Tresiba is working for you. It has been sucessful for me in eliminating (almost) night time hypos and I get much better results before breakfast. Still a bit rocky throughout the day but probably rapid related as my bolus needs seem to change like the weather.

 

[KookyCat]

I've had some rocky daytime figures too but I think that's the stability, with Lantus for me I had to change ratios up and down to accommodate it's odd behaviour, the stability of this one takes some getting used to. I'm still a bit skittish about using my "real ratios" because I expect hilarious random results, taking me a while to get used to being less cautious with rapid. In fact I didn't realise what a nightmare it was before, I knew it was bad but seriously it was ridiculous 😱

Thanks everyone for your nice words, it is rather lovely to be able to eat food without fear that the basal will join forces with the rapid and plot my downfall. I even managed hummus which for some reason was impossible before

 

[newbs]

I'm really pleased Tresiba is working well for you - I give it the thumbs up too.

I've been on it a few months and my control is a lot better than it was, with a definite reduction in hypos, and I need only 13 units in comparison with 19 Levemir. I previously tried Lantus but my control was even worse on that. I still have problems, like you, but things are definitely heading in the right direction.

Long may this good control for us all continue!

 

[KookyCat]

Well I thought I'd add to this some months on just in case someone in the future is offered Tresiba and like me wants to find out details but can't find them.

Do I still like Tresiba, most definitely yes, although I admit it might have a Stockholm syndrome edge to it because Lantus was so impossible for me. In fact for the sake of full disclosure I didn't know just how impossible Lantus was until I stopped taking it. Tresiba is the calming adult figure in my life, whereas Lantus was the naughty petulant toddler.

So in the 4 months I've been taking it some things have changed, no hypo drenches at night still stands, in fact I can go to bed on a 5 point something quite comfortably which is good because I struggle 95% of the time to get it above that level. That's good given that that was the most pressing problem. The big change is not so much a change as proof of concept. I've "known" for a good while that I have an odd profile when it comes to background insulin. I need very little overnight and in the morning but there's a huge hike in requirements between 11am and 3pm. The lack of predictability with Lantus was making it tricky to establish and prove, but with Tresiba it's patently obvious. If I take 7 units I lose control at bang on 11am, I compensate with extra bolus insulin at lunch but will most likely go hypo at 3:30pm because my background requirements have started to fall. If I take 8 units I'll circle a hypo at around 10am but just retain control over the 11am to 3pm period, then go towards hypo territory before dinner. That doesn't sound great I admit, but the important thing is the stability of it actually allows me to choose which option and play with the rapid to get the results I can cope with. No more Hobson's choice.

I don't feel cold all the time, Tresiba doses need to go up in summer for me (Lantus had to go down), I don't react to the injections at all skin wise (Lantus caused local reactions from the start, nothing startling but still obvious), and Tresiba stays more stable during exercise.

Weirdly Tresiba was marketed quite firmly as good for those who need large doses of insulin, but I've talked to two consultants about it and they both say it seems to have more advantages for the insulin sensitive amongst us. I was slightly freaked out by it at first, because of the hype around duration, but I didn't understand how freakishly stubbornly stable it really is. I've challenged it and it's held its nerve incredibly well. I'll stop rambling now! Except to say don't be afraid to ask for a different insulin, I didn't expect such a marked difference in quality of life, for the NICE folk there would be little evidence of benefit, a reported lack of night time hypos, very little change in my HBA1c to show (mine was low and that's the way I like it), but you can't measure everything with numbers, quality of life is just as important, and mine is certainly better.

 

[Redkite]

Really interesting stuff Kooky, and I'm so glad this is making life easier for you. I can completely identify with your experiences of Lantus - my son was on it between the ages of 5 and 7 - it hurt a lot when injected, and he'd have to go to bed on 16+mmol to prevent a hypo by the early hours, yet by the afternoon he would have a total lack of basal and any energetic activity would send his BGs sky high. It was a complete nightmare! For him, a pump was the answer, with basal tailored by the hour to his needs. Glad that Tresiba is working so well for you 🙂

 

[KookyCat]

Thanks Redkite. Ironically the switch to Tresiba has actually convinced me a pump would be much better for me than I initially thought. No chance of getting one here, so for the moment Tresiba is fine but we'll see!

 

[everydayupsanddowns]

Thanks for sharing your experience with Tresiba Kooky, really interesting to see how you have been getting on with it.

 

[DerryUK]

I was referred to my local hospital clinic by my GP when I was having night time hypos. I had tried Lantus and Levimere with no effect on the hypos. The only way I could guarantee not to have one was to go to bed with a BS of over 10.

I was put on 12 units of Tresiba about 9 months ago. This gradually increased until I got to 22 and I have since reduced it to 20. I can't remember when I last had a night time hypo. I now go to bed with BS of between 8 - 10. That level gradually falls during the night with the low point (BS around 5) at 3 AM. My BS then start increasing again until I have a morning Novorapid.

My meter average BS is 9 -10 and my HBa1c is 50. I did complain to the clinic doctor about my averages and he said carry on with what you are doing and maintain your HBa1c.

Derry.

 

[driis01]

Hi KookyCat,

I'm new to taking insulin - I just took my 1st Tresiba dose 2 days ago. I take 8 units at bedtime. Is that a lot or a little compared to what you know? I've been a type 2 diabetic for almost 20 years and for me, having to take insulin is a very big emotional hurdle to accept. I basically cried all day Monday when the doctor told me. I know - I'm being an emotionally baby about it but I've always had a fear of insulin.

I've been searching for reviews on Tresiba and found yours. It sounds like you're pleased with the results and that gives me hope. Did you experience any weight gain? When my endocrinologist told me that was a possible side effect, I was so bummed out (and more tears). I had previously taken Invakomet and that actually helped me drop about 6 pounds but the side effects of Invakomet were too much and my doctor changed my meds. I was put on Bydureon for 5 weeks but instead of getting better blood sugar control and dropping a few more pounds, my blood sugar went up, gained weight and all I got for my efforts were these lumps under my skin where I injected. Totally sucks!!

I will say that the needle for the Tresiba is a lot better than the needle that's used for Bydureon. You would think after almost 20 years of pricking my finger I wouldn't mind needles but I do.

I was pleased that this morning when I got, after taking only my second dose, my blood sugar was 144!!!!! I haven't see 144 in the morning in a very long time - usually it's between 180-220.

If you did gain weight using Tresiba, if you don't mind me asking, how much? It just seems like a vicious cycle - the more you weigh, the harder it is to maintain bs control but if the insulin you take to control your bs is going to make you gain weight- what's the point?

I am curious to know if it's possible to get off of insulin once you've started or does your body get used to having insulin and won't let you quit? I used to be pretty active - running marathons and half marathons, but when my father fell ill last year, it was too much to train anymore so I haven't exercised in almost a year! I plan on getting back to the gym and running again with my running club -in the lovely Houston heat and humidity.

Any insights you have will be appreciated. Thanks for your time.

 

[trophywench]

Kooky is a T1, driis - so it's not possible for a single one of us to come off insulin without dying LOL

However - it has been known for some T2s to do so.

Why not start another thread ? or, is there not a US T2 forum that could help you and will obviously also be used to BG readings being 18x more than ours! - the difference is so huge that even though I know that, I always do a double take when I read them.

 

[KookyCat]

Hi driis01
Sorry to hear you're struggling a bit with the transition to insulin, I know it must feel like a big step, and I think everyone finds it hard. I'd say 8 units is quite a small dose, I take 51/2 units a day and generally people with insulin resistance require more, some folk with type 2 will take much much bigger doses. I haven't really gained weight, well a couple of kilos but I was actively trying to put weight on so I wouldn't worry too much. Insulin itself doesn't make you gain weight exactly it's a bit more complex. If your body couldn't use the glucose in your blood effectively pre insulin then you could have been maintaining your weight but still taking in too many calories. So let's say your body could only process 75% of what you were eating before, the insulin is kind of like the key that lets your body use the other 25%. If you were maintaining before then you might put on weight because your body has become more efficient and it's using the full range of calories you're taking in. In which case you may need to reduce your intake a bit to rectify it. So if you keep an eye on it you should be OK. There is another potential issue around large amounts of circulating insulin which can be an issue for those with type 2 but it's a bit of a contentious area. People with T2 tend to produce insulin but can't use it, so putting extra insulin in can stimulate the body to store fat (some believe), so there's a potential chicken egg situation around weight and type 2, but I don't know a great deal about that theory I'm afraid.

The good thing is the blood sugar is responding (I'm sorry I don't really understand the figures we have a different measurement system here) I know it feels like a frightening step into the unknown but insulin might actually be the best thing that's ever happened if it brings the blood sugar under control and you start to feel a bit more human again. I've found Tresiba to be much better for me than Lantus, much more stable and generally easier to control. I think there are some other T2 members on here who've managed to come off insulin and some who've managed to get off medication altogether but I think that largely depends on individual biology, perhaps one of them might come along and offer some insight.

I hope you start to feel better about it soon, and the Tresiba works for you. It might be worth starting a thread in the general messages too, so more people will see it and respond, my experience of Tresiba may be a little different and I wouldn't want you to miss out on advice from our knowledgeable T2 folk who might offer a better insight than I can 🙂

 

[driis01]

Thanks so much KookyCat. I've been searching the internet to find someone who actually had experience w/ using Tresiba and your post was the first one I found. All of the rest have been reviews from the pharmaceutical company. Reading your review was helpful b/c it gives insight from your experience and not a drug company.

That's an interesting point about how insulin can make the body produce extra fat. I was unaware of that and that's what I'm trying to understand is how insulin affects the body. It's all a big chemistry experiment I guess. Obviously I have a lot more research to do and I'm just beginning my search. Thanks for the quick reply!

Take care,

 

[KookyCat]

Glad it was helpful. You could look at Dr Bernstein's stuff in relation to the insulin/fat storage issue, it's easy to read and might be helpful. As I said its a bit of a contentious area but interesting stuff. The essential premise is that carbohydrate rather than fat in foods will stimulate fat deposits, and insulin of course is the key to using glucose (which carbohydrate is). His thoughts on insulin resistance are interesting too. Let us know how you go on 🙂

 

[TheClockworkDodo]

Thanks for this thread, @KookyCat - I've been looking for more info. on Tresiba and it's very interesting 🙂

The huge hike in your insulin requirements between 11-3 is interesting too - I'm still having highs mid morning every day, no matter what I try, and then plummeting and often hypo-ing by lunchtime (which for me is often around 2 or 3pm). I'm hoping the Tresiba will give me a bit more stability hypo-wise so I can increase my breakfast bolus to deal with the highs.

 

[TheClockworkDodo]

Well, I have now been on Tresiba for just over a month.
I no longer have red blotches all over my legs from the Lantus - yay! (the negative side of that is that it's a lot harder to rotate my injection sites now I can no longer see exactly where I injected for the last fortnight or so 🙄 )
I am still hypo-ing for England, but I'm having more hypos over 3 and fewer under 2! They are also more predictable - I can see a pattern to them, which I never could with Lantus. And that means I can adjust doses of both basal and bolus to get things more stable, which I am gradually trying to do.
I no longer seem to rocket into the mid-teens mid morning.
Other than that I haven't had any noticeable changes - no change to my thermostatic instability, or weight, or anything else that I can tell.

The other good thing is that, having managed to get a nice new blue Novopen Echo on prescription for my Tresiba, I was able to point out to the surgery that the instructions said that
a) I should have a spare and
b) I had been using a clunky old half unit pen for my Novorapid for 6 years and should probably have replaced it by now
- so they prescribed me a nice new red Novopen Echo for my Novorapid (I'm keeping the old pen as a spare) 🙂