My son is currently on a pump and openAPS, but given his frequent site issues I’m considering an untethered approach with Tresiba. The issue is that he has very variable basal rates. He gets essentially no insulin from about midnight to 6am (his basal rate is set to 0.025 units/hr but openAPS turns it to OFF for hours basically). , about .175 units/hr the rest of the day, except for a late evening peak of about .225 units per hour from 6pm to 10pm.
I guess what I’m wondering is whether Tresiba can handle such variable basal patterns? Would there even be a way to dose it to, say 50 or 70 percent of my son’s basal needs given that they are 0 at night?
Sorry, no available basal insulin can achieve a profile that is absolutely zero for part of the day.
But what you don’t know is whether your son’s circulating insulin actually goes to zero simply because the openAPS sets a temporary basal of zero. Rapid insulin has a duration of action of 3-5 hours and there will be circulating levels of insulin for hours. The question you should be asking is whether a basal insulin could provide part of the daily basal dose and still enable achieve good control with openAPS overnight. This I cannot answer.
Yeah, we think it’s unlikely that he is truly getting 0 insulin for 6 hours, which is why it seems like it might even be an option. But I guess I’m wondering more if people who used to have a pump and had very variable basal rates set found they actually didn’t need it for some reason with Tresiba?
I think the main point/virtue of Tresiba is that it’s very long-lasting and constant.
If you are trying to approximate a variable pump basal with an injected insulin, you might get close by using Lantus or Levemir, and by timing or splitting the injections.
The reason I made an appointment with my doc was to ask for levemir instead of lantus because I felt I needed he adjustability of taking two different sized doses morning and night and felt levemir would be a better fit for that strategy— I need far less insulin in the evening than in the morning.
He insisted I try tresiba instead. It is not what I wanted. I pushed back and insisted on levemir, because I KNEW I needed to be able to adjust it for my variable needs throughout the day.
Finally he said “I understand exactly what you’re saying. And, I can see you’re not going to leave here without getting your way, so I’ll give you both-- but I want you to try the tresiba first because I think it will work better for you”
I was skeptical, I knew damn well I needed the adjustability of a twice daily basal because of my varying needs throughout the day.
I was wrong. I have never looked back since switching to tresiba. Never used the levemir, probably never will. I don’t really understand why tresiba works that way for me, it doesn’t seem logical based on my knowledge and experience-- but it’s great.
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Maybe @Terry4 could provide some insight. I’d be curious to see how variable his pump basal rate is and how he found Tresiba. Personally, I think anyone who can successfully use a basal insulin has fairly flat basal needs. Not everyone with Type 1 has highly variable basal needs, just like not everyone has the same insulin sensitivity.
I’m not using the untethered regimen myself, but I have some Lantus here and have been meaning to give that a try soon. Like your son, I have issues with infusion sets that can be very frustrating at times.
Since the purpose of the untethered regimen is to provide a percentage of the basal as a long-acting insulin and make up the other percentage from the pump’s basal rate, I think it would be impossible to achieve a period of no basal rate with Tresiba. Even going to no pump basal would leave however many units of Tresiba you’d injected active for that period of time. This is actually supposed to be one of the advantages of the untethered regimen: an interruption in insulin due to a site problem doesn’t result in such rapidly rising and extremely high blood sugar levels.
I really don’t understand the perceived benefit of the “untethered” approach? The main (imo the only) benefit of a pump is basal adjustability… So if you’re using injected basal and the pump, particularly if you have infusion site issues— that seems like just going far out of ones way and incurring substantial expense to ensure they experience the worst of each, while negating the benefits? I must be missing the concept.
The untethered regimen is actually taking advantage of the benefits of pump and injected basal while negating the negatives of both. The advantage to the pump is variable basal rate, but the disadvantage is that it uses only rapid-acting insulin. The main disadvantage of injected basal is lack of basal rate variability, but the advantage is that it lasts a lot longer.
The untethered regimen provides a portion of the basal as injected, and makes up the other poriton with the pump’s basal rate. Therefore, if insulin delivery on the pump is interrupted for any reason (the one disadvantage of pumping) the basal insulin on board prevents blood sugar from going too far out of control. Conversely, if the injected insulin provided is, say, 50% of the overall basal needs, the pump can still be used to make up the other percentage of the basal needs and alll the basal rate functions (variability, temporary increases and decreases) can still be used.
My basal needs vary from 0.4 units per hour up to 1.1 units per hour. I have a pronounced and prolonged dawn phenomena bump from 1 a.m till 11 a.m. It drops to 0.5 units per hour in the afternoon and down to 0.4 units per hour from 10 p.m. to midnight.
I reviewed my Dexcom history with Tresiba today and I was surprised by how much I forgot. First of all, I used Tresiba for a full three months, February 13 to May 13 of this year. I actually had better control than I remembered prior to taking a 7-day Alaska cruise from April 30-May 7. My loss of control coincided with that cruise. When I returned home following the floating eating and drinking fest, I gave up on Tresiba a week later.
I do remember my blood sugar drifting higher at night and then lower in the late afternoon. My once per day dosing had to balance those two opposing periods. I did make a lot of bolus corrections using Afrezza and my Apidra pen and I also made many carb corrections, particularly in the late afternoon.
Sometimes it helps to dispassionately review the facts. My Dexcom Clarity 14-day standard day graphs while on Tresiba, prior to my cruise, were very good. I’m thinking that my corrections compensated for my daily lopsided basal needs.
Now I’m thinking I should give it another go. I have plenty of Tresiba to use.
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Interesting. There must be many factors that contribute to how well Tresiba works for one person versus another, but my guess is that this is primarily determined by the amount of remaining endogenous insulin production. I can see how even small endogenous levels could make a good flat basal insulin such as Tresiba “just work.” If the dose is on average dialed in correctly, the remaining beta cells have a chance to smooth out relatively small variations in glucose produced by liver during a day. On the other hand, if a person has essentially no endogenous insulin production, such within-day variations easily lead to much larger bg variations, and one has to resort to more MDI corrections, or to set variable basal rates on a pump. In other words, my hypothesis is that Tresiba should, on average, work really well for adult-diagnosed T1 within say the first 10-15 years or so, and for most insulin-dependent T2, but perhaps not as well for others. It should still work better for anyone using MDI, because alternative basal insulins are just not that flat or consistent. @Sam19, I have no idea where you are on the T1D spectrum, and a sample of 1 does not mean anything anyway, but I’d still be curious if your case would support or contradict my hypothesis.
I suspect I have very small levels of endogenous insulin production remaining… recent studies have shown that virtually all type 1s do have at least some I infinitesimally small amount… I suppose the question is at what point is any amount no longer meaningful, and that I don’t know. I do know that my endo, who sees many type 1s recommends tresiba to them all… And his advice was good for me…
Are you interested in giving it a shot? It’s pretty easy to get a free sample of a couple pens-- that might be the best way to test your theory? I’d love to hear about it if you do…
@Terry4 had pretty a pretty good overall experience with it it seems
Also not sure how your theory would account for tresiba working better than lantus… I had my dose dialed in just as well with it, but still had to work a lot harder to avoid lows
My own hypothesis is that we are seeing a bias towards longer term type 1s just not trying it yet— because the pump was such a godsend a number of years ago that the diabetes community kind of just accepted that that was forever going to be the Cadillac treatment option. Wheras more recent t1s whose lives weren’t as profoundly improved by the pump revolution might be a little more open to trying new things. I am looking forward to hearing more reports from more old timers with it.
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One factor MAY be that Tresiba (insulin degludec) combines with lysine receptors. I am not very aware of how other insulins combine with other proteins. Yet apparently this medicine’s structure allows for the lysine hook-up, and that is different than other insulins.
(Obviously I’m not a medical professional!)
I wonder if taking L-Lysine supplement would affect the effectiveness of Tresiba?
Or if an individual has a larger sensitivity to this exact protein, how they would be affected? Just curious.
I have two family members who cannot tolerate any food or medicine on the GABA chain. It’s Like they have a glutamic acid intolerance. Or an inborn metabolic defect to the protein glutamate.
So I’m certain there are people who may not tolerate this medicine, if they are in that rare group which can’t tolerate lysine.
The main benefit is cause my son is 2-years-old, frequently dislodges his site while at daycare, and then can spike dangerously high when not in my care. Sometimes this happens when he’s napping in a spot with bad WiFi and so I don’t know until he’s already close to 400. So the main thing is insurance against DKA due to pump site failure, the secondary benefit would be for times when he is swimming or wants to have the pump off for a while. What we find is that if he goes swimming, we need to disconnect the pump,he goes low from the exertion, then goes very high afterwards due to the time without the pump site on. I’m guessing the curve would be smoothed out if he had some basal in his system at all times.
But yeah, I’m not sure yet that the marginal benefit would outweigh the cost of a daily injection, the risk of more sustained and “baked in” lows, or jsut the additional insurance wrangling.
Ultimately, though, I’m sort of intrigued by the fact that many people seem to argue that Tresiba provides a flat blood sugar even when they were very variable on a pump.
I get your reasoning…
It’s not hard to try a tresiba sample and go back if you don’t like it. It’s not like you’re signing a contract…
I don’t get “baked in” lows with it… But I’m also an adult onset man instead of a two year old… If one of my kids ever became type 1, it would be the first thing I’d try…
Interesting hypothesis. Sometimes I wonder if some of the spikes and lows we see are not a result of changes in my son’s underlying insulin sensitivity or basal insulin needs, but instead, some random fluctuations in how well the insulin is absorbed. So sometimes we see an IOB of X, but he is dropping as if he still has 2X left in his system. Or he is rising during a nap because his circulation slows down and less of the insulin sitting in his sub-q tissue is making it into circulation. That may not reflect a truly increased basal need, but rather a poorer delivery at that time. If that is the case, then a really stable drug like Tresiba may reveal that in fact my son doesn’t need huge variation in basal needs, but instead is just dealing with absorption issues.
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I’m not a biochemist by any means, but that seems to make sense.
Ultimately, the proofs in the pudding. I may never truly understand at a scientific level why something works better for me, but I know that it does-- and that’s good enough for me. I hope you try it and it makes you and your child’s life easier, safer, and more simple
I’m pretty sure I’ve read in multiple studies that a non-fasting c-peptide of 0.2 or more is considered to have a positive impact on control (lower A1c, fewer lows, need less insulin, fewer complications), though obviously that’s not enough to survive on without taking insulin. The study that found that >60% of Type 1s had some remaining insulin production after 50 years used a special test that measured non-fasting c-peptide down to 0.03…I think once you get down that low, it’s only interesting to researchers. In thinking of this, it’s interesting to me that most on this site seem to get a fasting c-peptide while the research seems to use non-fasting c-peptide.
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That’s correct, but these amounts can differ substantially, and are not necessarily infinitesimal or insignificant at all. In particular, adult-diagnosed people with T1D often have substantially longer honeymoons followed by slow decay and non-trivial amounts of working beta cells for many years, which can make the bg control problem objectively much easier (studies have been done on this topic).
Ok…
Still think you should give it a try and tell us how well it does or doesn’t work for you.