My experience with Tresiba so far

Type 1 and LADA
1

I wanted to post my experience just so I can possibly help out others, or just be of information. (This might be a little long, bare with me)

I was previously on Lantus but was taking 16 u every night at midnight. I’m a night owl and work from home, so I tend to stay up really late, and get up later in the mornings. Per others suggestions I decided to lower my dose when starting Tresiba.

I started out at 14u of Tresiba at midnight, about 3 weeks ago. I started it right after my previous menstrual cycle so I knew my hormones wouldn’t be in affect of my BG’s. Before I started Tresiba I was fighting with high numbers, 200-300 on a daily basis at least once a day, for a couple months. I kept catching small virus’s/colds, whatever, or would be affected by my hormones/stress. I was all over the place. Well, the 14u of Tresiba over a week didn’t seem to make a difference, so I increased it to 15u and tried that for about a week. A little better, but I was still having major spikes after meals. If I would increase my meal insulin it wouldn’t do much and I didn’t want to crash either (I take Novolog).

So here is where I am: I’ve been taking 16 u now for 4 days. The 4th day I had basically perfect numbers; a couple higher ones but that was me being afraid of taking too much insulin with food. I am back to the point of starting my period tomorrow or Friday, and that has always guaranteed me low blood sugars. I have always also fought highs the week before I start, so I was planning on that being a factor too.

And here is how today has gone: Woke up on my 5th day of 16 u. and BAM. Nothing but lower numbers, and fast dropping numbers. I woke up 72 at 7:30 am. Went back to sleep after treating it. Woke up at 72 again at 11:00 am. Treated. Throughout the day I kept going lower, even with no insulin on board. I skipped meal insulin for lunch (23g of carbs) bc I was only 115 2 hours post previous meal, and didn’t want to stack when I was already feeling weird. I ended up being 86 before dinner. I only took 3 u. of Novolog with dinner: potato soup and bread, and 2 hours post I was 163. WHAT?! I’m never under 180 after a meal like that only having 3 units to cover. Usually for a meal I would take 6u or more. In total I only took 14u. of fast acting insulin today when my normal is closer to 30u.

Earlier I went ahead and ate some extra carbs because I was going to be organizing around the house which always makes me drop. I ended up 224, and an hour after that 109. :open_mouth:

I feel like 16u is too much for me. I know the numbers I’ve typed out for the most part seem really good, but I had to consume so much sugar today in between meals to keep me from dropping too low, ending up in normal numbers. I’ve never taken so little Novolog and have had lower numbers, ever.

I took 15 u. tonight but I’m honestly nervous. With monthly hormones about to hit me, I’m scared I’m going to be fighting a train of lows constantly the next few days since I know Tresiba takes a while to adjust between dosage changes. I’m wanting to love it, and while I have noticed more stability than Lantus, it just hasn’t been as smooth as I would have hoped for after reading such great things.

If you are on Tresiba and switched from another long acting, how long did it take you to get your dose perfect? I am on the U-100 pen so I can adjust 1 unit at a time. I know it takes messing around and so many factors play into our numbers, but boy am I tired! I am glad that my highs are coming down and hopefully now that I’m well I won’t have to deal with anymore of those constantly, but I also don’t want lows nonstop either.

So to end my ramble: I’m still adjusting. I’ve read a few people say it took them a while, but I’m curious what others experiences have been on Tresiba! As a lady it makes it more difficult to fine tune things sometimes, but I’m hoping I can get a grip and things will smooth out soon!

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2

I have the opposite problem during my period. I go high and I stay high so I have started taking 3 extra units several days before it starts. So you might have to reduce your dose a few days ahead of time. It took me 3 months (I think) to get the right dose figured out but it probably would have been resolved faster if I had done a fasting test.
I love Tresiba compared to Lantus which never really worked well for me and it has contributed to getting my A1C below 7 for the first time in my life. Being a woman with diabetes adds a whole nother level of crazy to this already difficult disease so it takes quite a bit of trial and error to get our Bg’s under control during those hormone fluctuations.

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@daisy707, glad Tresiba is working well for you so far! It took me probably a few weeks of tweaking and going back and forth before I settled on a dose. I still need to adjust it if my activity changes significantly (like going on vacation), which is tricky because of how long it lasts/takes to shift. If your period is both regular and has distinct effects that you can track, it’s possible you might be able to shift by a unit or so in anticipation of when you tend to run higher (and then back off before you tend to drop back).

Re: the post-meal spikes, have you tried taking your Novolog well before you eat, like 30-45 minutes (aka prebolusing)? I think most of us find that’s necessary for carb-y meals.

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4

FYI, Dr. Richard K Bernstein recommends splitting the dose of all basal insulins – EVEN Tresiba. He says that, while the profile is more stable, it’s not totally stable across 24hours for “most people” (in his experience) unless you split the dose.

Can’t give personal experience, since I’ve been on a pump since before Tresiba was available. I know Dr. Stephen Ponder went off his pump to MDI in favor of Tresiba, though.

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It really does take a lot! I’m still running low today so I’ll be glad when my lower dose kicks in. I thought I was adjusted enough before my period came but apparently not. It’s looking like Tresiba takes about 4 days before I know the full effect that the dose will have. Slowly but surely!

6

Thanks for the advice! and Yes I’m always regular so I can definitely plan; I just thought I was adjusted to the right dose, but apparently it’s taking 4-5 days for Tresiba to fully set in dose wise, so it’s taking me a bit longer to figure out what’s going to work. At least I’ll be able to plan better next month! I’ve also tried pre-bolusing. It only ever works if I’m already at a high number; above 200. Anything lower than that and my insulin kicks in before my food digests. I don’t have any stomach issues or anything, but I’ve played around for it for years and just can’t make it work. If I take my insulin any earlier than taking my first bite of food, I end up crashing before I’m done eating. :confused: Maybe that was just on Lantus, I’m not sure. But since I’m having so many lows at the moment, I’m going to have to experiment more with that later.

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I have the split dose option in the back of my mind for sure! If I can’t figure out the right dosage that works in one go, I’ll probably try splitting it. Thanks for the reminder!

8

We find even two units makes a huge difference. My DD is very active on school days and much less so on weekends. We increase her tresiba on Saturday and Sunday nights by two units and it works well.

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I find a big difference in just one unit! I switched back to 15 u because I was running too low on 16. Now though, I’m finding it harder to stay in normal range with only 15. After this hormonal week, I might switch back to 16u to see if I can get that to work. I seem so much more insulin sensitive some days, and others not so much.

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I just wanted to share something we are pleasantly surprised at with Tresiba. My Dd is 16 and she splits her Tresiba (42u) into two injection spots - but at the same time. She wanted to break it down further to see what would happen and tried 14,14,14 in different spots - again, same time. We are really amazed at how much better it works - in fact we’ll have to decrease it by a few units because she is on a constant downward trend. Just wanted to share that little experiment with everyone. :smile:

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11

That is interesting. I know I’ve read over the years that rapid acting insulin’s duration is partially a function of the size of the dose. All other things held equal, a larger rapid acting insulin dose leads to a relatively longer duration. I don’t know if that’s true with basal insulin like Tresiba.

I experimented with Tresiba as part of a break in long-term pump use in 2016. I couldn’t find a dose size that kept my early morning dawn phenomena in check without driving me too low in the late afternoon. Perhaps this split site simultaneous dosing technique would give the control I’m looking for with Tresiba.

12

The difference between 2 and 3 simultaneous shots was apparent by the morning following the change. Her nomal 1:6 ratio was too strong. She hates the feeling at the injection site of a bunch of insulin at once, so that spurred the trial… glad we did! We love tresiba and now we love it just a little more.

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Thanks for sharing your story. I also started on Lantus but am much happier on Tresiba. My needs are slightly less than yours are, but I think I went though a lot of the same adjustments when it came to getting the dosage right. I think in the end it took me about a month to find the right dose.

The biggest adjustment I had to make, however, was a mental one. I was so used to having higher numbers that it unnerved me to see my numbers dropping below 100. I just felt more “comfortable” with numbers around 120 and I thought that anything under 100 was inevitably going to lead to hypoglycemia. But our job as diabetics and insulin users is to as closely mimic a non-diabetic as possible. That means trying to keep numbers between 70 and 100. So once I made that mental switch, I began being more patient with my low numbers and would not react as drastically to a falling trend as I used to. As a result, I often see numbers fall to around 70 and then safely hover there.

Obviously everyone is different and will react differently to the same medication, but I would encourage you to be patient with yourself. Long-acting insulin like Tresiba is supposed to keep us stable overnight. My stable overnight number is around 70, but it took me a while to be comfortable with that and to not view it as a hypoglycemic low. If you’re constantly trending downwards overnight, then you need less Tresiba. But if you are flat overnight, then maybe being at 72 isn’t as a big of a deal as you think it is.

All this being said, I am NOT a doctor, I’m just something sharing advice based on my own experiences. But once I made that mental switch to viewing 120 as high and began being comfortable around 70, I realized that I had found my ideal dose of Tresiba.

Good luck.

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Well, taking less tresiba results in an upward drift throughout the day. When she was on Levemir x2/day, her daytime dose was significantly higher than the night dose. With a once daily dose, you can’t accommodate that. I think the 24/7 stability people experience with tresiba comes from them having similar basal needs throughout the day. This is where a pump would certainly be advantageous with different basal settings.

15

In some cases, maybe. I have a higher need in the afternoon, and at 3 am. I tend to aim my Tresiba to 70-90 for the non-spike times and I use Metformin at noon and 9pm to lower the peak times.

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I think you’re right about this. I’ve been on the fence about switching from MDI to pump for years, but the ability to adjust basal is definitely high on the list of reasons to consider the switch.

You might consider using the U200 formulation of Tresiba (twice as “concentrated” as the “normal” U100). You could inject half the volume of liquid and get the same amount of basal insulin.

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Yes, she uses the 200u strength, but takes 42 units and finds the feeling of 20u or more too much for one site.

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18

Tresiba was very bad for me.
I would take 2 shots a day, but if you decided to add an additional dose it would cause severe flu like symptoms, where I couldn’t even go to work or function.
Happened to me 3 times.
I was out.
Also gained and retained water in abdominal and legs area.
Never will I take Tresiba again.

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That’s awful to hear! I haven’t experienced anything besides trying to get my dose right, so that I’m not going too low or high. Still tinkering with it. Sorry it didn’t work out for you! I’m hoping I don’t develop anything adverse with it!

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It’s taking me some getting used to as well! I’m so used to Lantus dropping me so far and so fast! When I would be at 90, I could drop to a bad low quickly (below 60). I am still battling a bit of hypophobia from a bad low I had while on Lantus about 7 months ago. I had to eat about 100g of carbs to get my blood sugar to stabalize and stay above 100 (I had dropped to the 40s). It was awful! Hormones played into that as well as some unplanned exercise. It was a horrible night, so I’m still trying to not be so scared of dropping too low. I’ve been on 16u now at night for 10 days. I’m hovering around the 90s and had one lower number of 69 today. But I have to say, the lower normal numbers are making me feel super sick.

It’s not that I’ve been running extremely high before that, but I woke up this morning at 92 and after eating a few times today I’d be back there. But it’s causing extreme nausea. I’m sure it will just take some more getting used to. I still don’t feel 100% safe going to bed that low to be honest. There have been a couple nights where I’ll be at 120 then drop to 75. I’m still afraid of going too low in my sleep. I don’t have a CGM or anything, so I’m on my own guessing what my numbers are. Trial and error I suppose! I just wish I didn’t feel so cruddy when I’m at 95 or lower; it makes it really difficult to want to eat anything normally throughout the day, even though I push myself too.