FUDiabetes

Tresiba, Long-term pumpers, R/H users, Pump →  Tresiba T1Ds... Help!

So this may be a bit lengthy, but I’m VERY curious about these things:

For Tresiba users/lovers: I am new to Tresiba and MDI.

A. I get a blotchy red spot after I inject for a few days of Tresiba… Anyone else have this? What do you do? Can you inject H/R over/near it for follow up injections?

B. Do you use pen caps and pens? I find that there will be a bauble of insulin still coming out after I inject, hold down for 6-8 seconds, then exit the needle. Isn’t this under-dosing me? Maybe it’s the 32g needle? It is a very thick looking solution for a thin needle like that… Thinking of using syringes and vials.

C. While I injected 14 units of Tresiba, I felt it burn like a mother. The proceeding hours were higher than usual. Anyone experience this? Any input?

D. I am a nursing student right now. Seeing as I will be working as an RN in the coming years, how does Tresiba fit into the whole perfect basal while at rest but too much when overexerting yourself for hours on end? Anyone have a variable workload job on Tresiba and it interferes/benefits them using Tresiba?

E. Are there any good sites to inject Tresiba that are better than others, or is it all good?

Pumpers: I have been pumping for 13 years now. Maybe I need to switch to MDI.

A. Any issues with scar tissue? I find that some sites just keep me high all day and I can’t get my BG down. I usually will change out sets… sometimes even 3 or 4 in one day!

B. I am noticing that my sites are lacking lately. I only use directly under the ribs now, as I have not usually ever touched them… This is very depressing as it might mean my pumping time is coming to an end. How do I continue to pump with all the built up scar tissue around my legs and abdomen??? I love the pump, but not the scar tissue/lack of insulin absorption…

R/H users on for MDI :

A. Dr. Bernstein recommends using R for low-carb meals. R seems a bit outdated to me since I have been using H for ~15 years. Any good experiences with R vs H?

Pump → Tresiba changers:

A. Do you have any difficulty finding good sites from suspected/actual scar tissue that you have from pumping?

B. How much Tresiba do you take daily compared to your basal rates on your pump? My basal is set to 0.7 unit/hour, 16.8 units/day. I tried Tresiba a few weeks ago at 12 units per day. I stayed 220 BG all day flat and borderline DKA. Is Tresiba weaker than Humalog requiring a higher dosage of daily Tresiba?

Random Pump/MDI Question:

So I ordered Medtronic 670g on a whim due to Animas being shut down and me being a United Healthcare insurance (mmhmm). Anyways, I just got the order right now, and I’m thinking of sending it back… Thoughts?

Thank you to anyone who answers, I know this is a long post, but it is needed!

3 Likes

R has been around a long time, but what matters is how it matches your needs. It is horrible for higher carb meals, but great for those that do low carb/ higher fat-protein.

I have been pumping for over 25 years. No problems with scar tissue. Have you tried different sets? Some think the needle sets (rather than cannula) work better, and may not scar. I use Quick sets, rotating sites between stomach and back/hips.

I went from using NPH/Reg injections, to Reg in pump (now novolog), so no experience with the long acting insulins. I would consider Tresiba if I stopped pumping, but have heard some report burning after injection. I used Lantus, Levemir only during pump outage.

Why did you take lower dose of Tresiba than your basal? You could try higher dose.

That’s a personal decision. But I know my next pump will not be medtronics, even though that’s all I’ve had.
I think someone has posted here about how to get omnipod covered by UHC.

2 Likes

I wouldn’t say I’m a Tresiba lover—it was horrible for me as a basal insulin, but I’m currently using it in an untethered regimen with a pump (15-25% basal as Tresiba, the other 75-85% of basal from my pump).

B. I use disposable pens, as in Canada that’s the only format Tresiba is available in (no pen cartridges or vials). I hold pen injections in for a count of 10, as that’s what I was taught way back in the 1990s. I also tend to hold pressure on the plunger. I don’t think any drops of insulin from the pen are from any sort of missed dose, just changes in pressure within the pen as it’s removed may suck a bit of insulin out.

C. Yes, I get burning at the injection site from about five minutes after the injection (not during) that lasts for about an hour. I actually just posted about this the other day. I haven’t come across anyone else who experiences this. With some insulins, like Lantus, it’s normal due to the pH of the insulin. Not sure about Tresiba. I was thinking it was some sort of minor allergic reaction in my case, because I have a lot of issues with allergies. But it may not be.

D. I have a variable job, sometimes lots of exercise and sometimes sitting all day. I also have huge variation in my basal needs due to hormones. And my basal needs vary throughout the day. And I find things like temporary basal rates helpful for during and after exercise. All of these are reasons why Tresiba was a disaster for me as a basal insulin. I stuck it out for a month, had the worst control I’d had in years, and then went back to my pump. There is no “perfect” basal insulin, because it’s going to depend on the individual and which insulin best matches their body’s needs. Tresiba is great for people who have flat basal needs. Lantus may be better for someone who can take it in such a way that its gradual peaks match their daily basal needs, but may be problematic for people who have a flat basal need because it can cause lows. Leemir may be great for people who need to vary their basal needs more often for exercise, hormones, etc. Pumps a great for people who need a great deal of flexibility in hour-by-hour insulin delivery. You just need to find the one that meets your needs the best, and then that is the “perfect” basal insulin for you.

A. I’ve basically “used up” my stomach for injections and pump sites because I used primarily that location for the first ~20 years of diabetes. I now only use it for CGM sensors. I don’t think scarring is that big of a problem if rotating sites correctly…but once an area develops a lot of scar tissue, I’m not sure how long it takes to “come back” as a usable site.

B. I use all sites for my pump: stomach, arms, legs, butt, hips, back (if you have enough fat!). I recently watched a YouTube video where someone said they put scar cream on their sites after removal, which sounds like an interesting idea to me! I try to take out infusion sets at the first sign of any irritation, and try not to let them go past four days. I also use metal sets, so if a set gets inserted into a spot that isn’t absorbing well, it’s easy to pop out and move to a new location without using a whole new set.

I haven’t used R since about 1997 and haven’t used N since 2005, but I did spend 10-15 years using these insulins.

A. R and H are totally different types of insulin. R is a short-acting insulin, similar to something like Humalog, but with a much longer action time. N is an intermediate-acting insulin that can’t be used to cover food but isn’t really a basal insulin, either. I haven’t tried R myself, even though I’m eating fairly low-carb, but many people have success with it if following Dr. Bernstein’s diet (very low carb). In my opinion, N is limited in its usefulness, and personally outside of using a couple units to cover the dawn phenomenon on MDi, I can’t think of many other situations where it would be useful.

2 Likes

Never once had any sort of red spot or burning with Tresiba. You could have a allergy or maybe you might want to try an longer needle. I was on a pump for about 20+ years, likely many it seemed like a big improvement when i started using it, but due likely to scar tissue i had all sorts of issues with absorption with sites day +2. I would say my daily tresiba dose is right around what my basel amount used to be. Remember you can’t really judge Tresiba for about 3-4 days until you fully tritrate up, the half life is 25hours, so typically you would run high the first 3-4 days, you can lay it out in excel. if your high or low adj it up or down say 10% after 3-4 days. I used to have like 5 or 6 basel levels thru out the day with a pump, i had excel files where based on my TDD for the prior say 3 days i would *.495 for what was my basel and multiply my current rates by a factor to get to the .495 of my TDD, i found that .495 in some journal online as being ideal. People say what do you do about the morning spike with tresiba, easy take 2-3u before having coffee. I would take that over a bunch of inflamed pump sites and living the life of darth vader any day of the week. The other great thing is you get away from a lot of complexity, your running low a couple times a day you back off a unit or two, avg is running high you bump it up a unit or two and wait a few days. In theory a $8k pump should be better but my experience has taught me different. Tresiba is an amazing basel.

Works great if you start rising when you get up in the morning. Not so great if you have dawn phenomenon, which is a rise at 3:00 or 4:00 in the morning. When I was on injections, I was waking up every morning at 3:00 AM to take some Humalog and then going back to sleep. I didn’t want to interrupt my sleep every morning for the rest of my life, so that’s part of the reason I went to the pump.

Again, great if your basal only varies by a couple of units over the course of weeks or months. A big part of why Tresiba was a disaster for me is with female hormones my basal needs can rise or drop by 50% (or more) over a 24-hour period. In a month of trying I never could find even a baseline dose that kept me stable throughout the day. I was constantly having either highs or lows at certain times. And then hormones hit and it was chaos.

I think there is no one-size-fits-all. Otherwise, we’d all be running an A1c in the 5s. Everyone needs to try different treatments and find what works best for them. Whatever works best for them is an amazing treatment, but may or may not be great for the next person to come along.

4 Likes

I use Tresiba. If I had regular major variability in my activity on a day to day level, I would either switch back to Lantus or move to a pump—Tresiba definitely would not work well for me in that context. I know some people say it somehow adjusts fine for them, but I suspect most of those folks have some residual insulin production or something, because it definitely doesn’t for me and doesn’t seem to for most other longtime T1s. Right now, my schedule is fairly consistent on that front, but when I go on vacation, I have to figure out how to shift my dose and it’s complicated. Also, I’m currently debating whether I want to change my strategy in order to adjust my basal rate better across my cycle, like @Jen talks about, because I’ve noticed some definite patterns. I’m not currently interested in pumping, but if I could tolerate Levemir (it gives me reactions), I’d probably switch to that.

Also my intolerance of Levemir looks like a warm raised red hive around the injection site that lasted for a couple of days. I developed the same reactions to Lente way back in the day. I believe that to be a mast cell reaction. I had to switch insulins to get it to stop—luckily I only have those reactions to certain ones.

I’ve been pumping for I think 16 years now and for most of that time I was rotating sites between my left and right abdomen and left and right lower back/upper butt. I’ve only just in the last 8 months or so added my thighs into the rotation. I do notice that my thigh sites have slightly better absorption than my abdomen, and I suspect that is due to some scar tissue on my abdomen, but I definitely wouldn’t consider my abdomen “unusable”. I was so young when I started pumping (5 or 6, can’t quite recall) I suspect the fact that since I was busily growing for many of my early years pumping I maybe didn’t build up scar tissue in my sites to the extent an adult might have.

As others have suggested, I’d maybe consider trying out a few different types of infusion sets to see if any of those work better for you. Also, just to spitball another idea that could potentially cause you issues, is it possible you’re experiencing changes in insulin resistance contributing to your BG staying high? I don’t doubt at all that you’re experiencing absorption/scar tissue issues, just throwing out ideas! :slightly_smiling_face:

Maybe try out new sites (like you’re doing below your ribs already!) and try to give your ineffective sites a rest. The importance of site rotation is the big thing I’ve always been told for avoiding scar tissue so if you can, try to find a few sites to rotate between

I have previously heard that massaging the site is good for breaking up scar tissue but I’m not sure if that has any scientific backing. It’s definitely a good excuse to get regular massages though! :wink:

1 Like

I switched from Lantus MDI basal to Tresiba a few years ago and find that changes to basal are not needed (for me) very often with Tresiba whereas with Lantus I was always searching for the optimal dose… I had some nasty 3AM lows on Lantus. My activity level varies a lot from day to day and I keep my basal tuned to the high activity days. This means that on inactive days the Tresiba dose might be a little low so I am like a manual insulin pump with multiple Fiasp corrections to stay in or close to range on those days.

I also want to point out that adjusting basal is a slower process with Tresiba due to the 2 day action time. I am maybe ultra careful but I usually adjust up or down in 1 unit increments with 3+ days between increments. This is a seasonal thing for me, I need to increase Tresiba dose in late fall and decrease in spring. It takes a few days for the adjustments to kick in.

I always use the opposite sides for basal and bolus…it helps me to not screw up when I am in a hurry.

@T1DNurse I don’t have anything to.add that hasn’t been said other than welcome! :slightly_smiling_face:

2 Likes

It’s not an either/or scenario. I use both, often at the same time. Think of R as an extended/square wave bolus on your pump that you have less control over, as it takes 30-60 min to kick in and lasts 6-8 hrs.

1 Like

just to put in my 2 cents: i am very very skinny in the abdomen and was getting a lot of scar tissue issues, despite rotation. i switched from a metal insertion to a plastic cannula and began changing out my site every other day, not waiting the suggested 72 hours. it has helped emensely and is extremely more comfortable.

i use a Medtronic Padadigm 523 Pump, and have liked it so much that i am on my second round with this model since my first one expired. (i have heard, unfortunately, that they are discontinuing this model. i havent a clue as to why, as it is very popular.) one of many things that i like about it is that there are MANY different infusion options to choose from. i have tried out about 4 different ones and finally settled on the one that i have been using for the past 2 years.

i know that some people give Medtronic a bad rep, but i am a loyal customer for many reasons. first off, their products work very very well; and secondly, their customer service is supreme (kind of like Dexcom service)

maybe this will help a little. hope so :sunny: