Pumping Untethered with Tresiba

Treatment Insulin
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So far, my 14-year-old daughter’s A1c’s (omitting her diagnosis A1c of 12.7) have all been within my range of tolerance: 5.2 to 6.8. As my daughter is a growing and constantly very hungry teen (who remains thin) and who wants to eat what all her peers are eating, I have decided not to apply for a position with the Carb Police Force. I do not want to deal with an eating disorder on top of the typical adolescent mishegas with which I am currently struggling. (I do not recall my older daughter’s adolescence being this challenging, which is not surprising in light of the fact that it didn’t include D.) But the Dexcom graphs have slowly but surely evolved into an endless series of “W’s” and “M’s”. Fortunately this has not included a total time spent low of greater than approximately 7%.

Here is the current regimen:

*Apidra insulin in an OmniPod pump:
I have recently resculpted her basal profile to include 7 different basal rates (down from 10) and have tried to more closely follow the recommendations of Gary Scheiner to include only one peak and one valley. My daughter experiences what I call a reverse Dawn Phenomenon. After essentially flat-lining all night at a respectable 75 to 110, she dips low beginning at about 4 AM. I have successfully and almost completely eliminated these lows by programming in a reduced basal rate, so this is no longer an issue. She then experiences the “When Feet Hit the Floor” Phenomenon, which I have also pretty much wrestled into submission with a corresponding higher basal rate. However, the remainder of the day and evening descend to the depths of D Hell, despite what I believe are thoughtful adjustments of various pump settings (ISF; I:C; DIA) which I undertake only after I recognize trends. And I also frequently employ temp. basals.

*Dexcom G5 with Share:
G_d bless Dexcom! As my daughter is so exceptionally sick of dealing with D, I have assumed the role of long-distance Head Sugar Surfer. My Dexcom app is set to alarm when she goes over 140 or under 65. Whenever this occurs (which is currently averaging about 10 times daily), I text her with instructions on how to correct, taking into account her class schedule (she has a tendency to run low during PE but shoots into the mid-to-high 200’s to low 300’s during color guard practice; no surprises there), and directional arrows. The Bolus Wizard on her PDM takes into account IOB, and I instruct her to override its recommendations frequently because she definitely becomes insulin-resistant once she hits 200. I do not believe that I am routinely observing either rebound highs (no preceeding lows that accompany these highs) or an excessive frequency of highs due to inadequate prebolusing or lazy SWAG-ing. (Although there is clearly room for improvement in the latter two departments…) I have arrived at that dreaded destination where the slightest increase in basal rates results in lows while frequent corrections have not been effective in decreasing my daughter’s time spent high. (I have come to accept significantly more time spent over 110, but the 200-pluses have got to go.)

I have a box-o-beautiful U-200 Tresiba pens which cost me a small fortune despite “good” health insurance (there’s an oxymoron for you :frowning:️) ready and waiting in the butter compartment of our fridge, and I am feeling Tresiba Ready :notes:. However, I am only interested in continuing to pump “untethered” while using Tresiba adjunctively. At this point in time, a regimen of Tresiba + Afrezza (while appealing to me) is not feasible because my daughter’s endo is not comfortable prescribing Afrezza off-label to a teen (and I respect and accept her decision). Plus this is a moot point because the idea of inhaling Afrezza does not appeal to my daughter in the least for reasons that remain unclear to me and which my daughter is unwilling to share. Tresiba as basal + Apidra as bolus/correction is also out because my daughter has absolutely no desire to return to what she considers the rigid hassle of MDI. OpenAPS or the Medtronic hybrid closed loop system is out (OpenAPS is waaay over my head, both the set-up and maintenance), and both of these options are moot because my daughter would willingly surrender her dark lipstick and thick black eyeliner before she would utilize a tubed pump.

I will be very grateful for any and all suggestions surrounding how I might proceed with a transition to pumping untethered with Tresiba. Thank you in advance!

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You definitely are aware of all the major factors and influences that impact your daughter’s treatment. Congrats on that. Earlier this year, I wanted to discover how to return to an MDI routine after almost 30 years of pumping. I used the U100 Tresiba pens and the U100 Apidra pens. I did this for about three months and I enjoyed being relieved of living with my pump as a constant companion. It took weeks for me to unlearn reaching for my “pump tail” as I got out of the bed in the morning.

My blood sugar levels were fairly good with the exception of overnight highs (up to 180’s or 10 mmol/L) most nights. I experimented with various doses and I found that a large enough dose of Tresiba that controlled the overnight would set me up for afternoon hypos. I adjusted the timing of the Tresiba dose but found it had little effect to help me. In fact, the ability to vary the timing of the Tresiba dose is an endearing quality to this insulin. As long as you leave 8 hours between doses, Tresiba does well. I finally concluded that my dawn phenomena needs during the night exceeded Tresiba’s ability to cover. So, after three months, I set Tresiba aside and returned to my trusty pump.

Then I saw mention of the “untethered regimen” where a person could use a long acting insulin to cover basal needs and use the pump for nutrition and correction boluses. I was worried about infusion absorption leaving an infusion site for hours on end with no insulin flow. So I decided to cut way back, but not eliminate the basal profile. I looked at my average basal insulin delivery over a few weeks and used that number to arrive at my total basal need. Then I reduced every basal period by the same amount. I think my lowest basal rate was 0.6 units per hour, so I cut 0.5 units from every hour of the day on the pump basal profile. In effect I reduced my total daily basal dose by 12 units (0.5 x 24 hours). That 12 units was the starting dose I used for Tresiba.

In my untethered regimen, for most of the day, my pump was delivering 0.1 units/hour, but was also delivering a dawn phenomena bump from about 1 a.m. to 9 a.m. I think the peak of that bump was about 0.6 units/hour.

While this all sounds complicated, I found it relatively easy to do and I got good enough results that I would probably still be using this regimen if I didn’t start experimenting with the open-source hybrid Loop artificial pancreas system. I eventually upped my evening (9:00 p.m.) Tresiba dose to 16 units.

This was a convenient protocol when I went on a beach vacation to Hawaii as I could disconnect from my pump for hours at a time with little BG fallout. If your daughter adopted this routine, she could easily disconnect for her PE class with little consequence. [I forgot she’s on the pod!] She would still need to replace the small amounts of insulin missed, like 0.1 unit for a missed hour, but that small of an amount can get lost in the “noise” that is diabetes.

So that’s how I did it. Your mileage will vary but perhaps you could design your own starting point based on my experience. Before I close, let me address what is probably the biggest criticism of using an “untethered” regimen. That is that it is way too complicated. That’s all a matter of perspective. Complicated routines in dosing insulin never slowed me down because I knew that they usually become much simpler in the rear view mirror. To each his/her own. I realize that my experience and values do not represent my diabetes cohort well. But that’s OK. When I observe excellent BG results and feel well, that is all the affirmation I need to know I’m on the right path.

Good luck! I know that throwing in the dynamic of a teenager into the picture can make my “complicated” routine an even more daunting task. If your daughter is willing to cooperate, I would let the experiment begin!

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I predict she’ll ditch the pump when she sees how well tresiba covers her basal needs.

What portion of her basal are you going to cover with the tresiba? I’d recommend at some point (at least) using 100% tresiba for basal and only the pump for bolus so that you can actually get a fair look at what the tresiba is bringing to the table in terms of basal

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I think I’m going to start with utilizing Tresiba to cover about 30% of her basal needs, then gradually moving forward with a possible goal of as close to 100% of basal as possible (keeping in mind that we may need to keep a little bit of basal going via the pump for “TKO” purposes because we are using Apidra.)

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Best of luck… as always is my concern that too many variables can make for a juggling act but I’m certain you’re bright enough to keep it all under control… I hope you two love tresiba as much as I do

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Your last sentence both reassures me and urges me to take the plunge into our pool of Tresiba. The main thing making me hesitate was the fact that (not for lack of exceptional persistence), T’s basal profile remains messier than I’d like. I have been torn between trying to nudge her basal program into something that more accurately reflects the fact that I know more than a bag of dirt (even food-grade :wink:) when it comes to managing her T1D before augmenting with Tresiba and fine-tuning her pump-delivered basals after Tresiba works its magic.

Will keep you posted.

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Do Me one favor— try it as a stand alone at some point-- when you’re ready. If it works this well for me I’d have to assume it can work well for smart people too

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You have my word as a gentleperson and a scholar, my friend.

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Pumping, MDI or some hybrid are ALL hassles. D is a hassle like little else I’ve had the displeasure to deal with.

But if an MDI approach works relative to the other preferences and limitations of a PWD’s life, my experience is that it can work perfectly well. I suppose I could lower my a1c by a tenth or two if I was pumping, but I’m not convinced that’s worth it when I’m starting below 6. I like MDI and I don’t mind a half dozen or more little injections a day. One person’s hassle is another person’s preference (remembering that it’s ALL a hassle).

A lot of my preference these days has to do with how well Tresiba has been working this last year. One thing to remember is that the individual T dose profile is not the same as the stacked profile of daily use. YDMV but for me the stacked profile has been remarkably flat and best of all, overnight too. Mornings are a different beast, but that’s when my bolusing starts.

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Let us know how it goes. I’ve considered the untethered approach, not with Tresiba (would love it but not approved for the teensy ones), but possibly with Levemir, but I’m worried its peakiness would make it way too complicated and messy to deal with.

I’ve read that people start with about 50 percent Tresiba, or at least that’s a common set up, but 30 percent seems pretty cautious. It’s made tougher because you have another person with opinions on the matter and so if you’re too slow to ramp up, she may get frustrated with having more days of out-of-whack BGs and random shots that seem to add no benefit to your routine if you start at too low a dose.

Also, I personally would stick to a very simple basal/bolus program with the Tresiba at first, like maybe less at night, more during the day (so two, maaaaybe three segments), and then rely on frequent pump corrections at first to do what you had been using basal for. This would allow you to see how the Tresiba is really working. Just be prepared for (and I don’t know, bribe or convince your daughter somehow to go along with) frequent corrections during this transition period.

I actually like Sam’s suggestion of going full-on with the Tresiba and then seeing how it affects BGs to just issue corrections via pump. You can always scale back if you’re seeing more lows. My guess is you’ll get to some steady state where the Tresiba provides mostly flat profiles and then you use the Omnipod to just round out the curves at a few spots during the day.

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I couldn’t agree with you more. The reason why I referred to MDI as a “hassle” is because that’s how my daughter views it. And I can understand and appreciate her perception in light of the fact that she is very much a “grazer” when it comes to eating. On MDI she needed to bolus for food up to 8 times daily. Needles were never an issue, but trying to avoid stacking her doses became a second full-time job for me. Trying to get her to eat more “free” foods (what her inpatient staff called all food allegedly not requiring bolus insulin) resulted in her experiencing a significant loss of control over what she could put in her mouth, and I chose not to pick that particular battle. Pumping has been an infinitely better fit for her. But you won’t hear me arguing with you over the fact that D, no matter how it is sliced or diced, is the black hole of time suckers.

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I’m changing drug plans this month so I intend to check whether the new one covers Tresiba. Based on experience, I don’t hold out much hope, but you never know. Due diligence . . .

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my guesses…
depends how much she drops the basal back on a sick day? and exercise? perhaps a 70/30 split with tresiba and basal on the pump to start with ?

I would think her bigger problem if she in on the carbs, she may be better to split bolus with the pump and use a pen as well. bernstein says that a big bolus injection is better with 2 injections…in this case the pump can be one and the pen the other…the pen first and part pump …followed by squarewave/delay bolus to finish it off. from memory he talks of 7-10U as a good dose in one injection.

also if she normally is on lower carbs…her C:I may be greater when having a carb hit. but that will work out as she goes.

have it what she can do and not what she can’t…she will probably get sick of feeling schite after a big carb meal, with the following spikes and lows and self limit in the end (fingers crossed smiley)

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I would be optimistic… it’s pretty much becoming the gold standard it’s not like it’s some highly exotic drug. Every plan I’ve had occasion to look into has covered it

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I’m neither optimistic nor pessimistic, in my experience they are both traps. If I were going to prophesize, I would err on the side of pessimism based on a wealth of experience (and the fact that my current plan emphatically does not cover it–I checked). But guessing about this is really an academic angels-on-the-head-of-a-pin exercise. I’ll know the real answer soon enough.

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My fingers are also crossed RE the carb issue! (Especially since this Forum has enabled me to see The Light. :grin:)

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A religious belief in a well-crafted PA can help.

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Lol… ok David… in the amount of time you just spent being all philosophical about it you could have called them or checked their website :wink:

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Gee, I wonder why I didn’t think of that?

That is not doable, yet, for reasons i won’t discuss. It will be within a few days.

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Interesting. It’s not on my insurer’s newly released 2017 formulary. Neither is Afrezza. I’ve not had occasion to try to get either one, so they may be making exceptions, but they’re not on the published list.