Building a Foundation with Lantus

Posted on March 9, 2016 by Laddie

More than once I have written about using injections of Lantus in combination with an insulin pump. Although I have good results following this regimen, I tend to abandon it after a few weeks because it adds complexity and expense to my already complex and expensive diabetes life.

For those of you not familiar with the idea of using injections of a long-acting insulin along with pump therapy, this strategy is called the Untethered Regimen. It is described in a 2004 article by Dr. Steve Edelman as a plan where the user takes a pre-determined amount of basal insulin by injections of Lantus (or other long-acting insulin) and uses the pump for the rest of the daily basal requirement and for most or all of the required boluses. This approach allows a pumper to disconnect from the pump for long periods of time without worrying about erratic blood sugars and even DKA. The user still benefits from the flexibility of the pump with the ability to precisely dose for meals and corrections and to use temporary basals as needed.

In my previous experiments using the untethered regimen, I had the following pros:

Smoother basal action
Better pre-breakfast blood sugars
Fewer highs from changing infusion sets
Less risk of DKA
Ability to have pump-free time

Somehow the cons always won out and I went back to pumping 100% of my required insulin. The disadvantages I experienced were:

Hassle of shots on schedule
Not enough flexibility for temporary basals
Loss of prime on my Animas pump
Increased cost
Insulin plan more complex

So why I am rehashing this topic now? As you can probably guess, I am back using Lantus along with my pump. I have been struggling with overnight BG numbers for months, most noticeably spikes in the middle of the night followed by early morning lows. I have tried multiple changes in basal rates with little success. Similarly reducing evening snacks, changing my dinner menu, and giving up alcohol didn’t reliably fix the problem. My guess is that I have been dealing with a hormonal “dawn phenomenon,” but the pattern has not been reliable enough to make huge and somewhat scary increases to my overnight insulin.

About 10 days ago I decided to add Lantus to the mix. Rather than using two injections for 75% of my basals as I did in the past, I am giving 50% of my basal in one injection of Lantus at about 8:00PM. So far this is working great and I am not experiencing the negatives that I did in my previous Lantus trials. I’ve had night after night with few or no Dexcom alerts. I don’t need a “get-out-of-bed” bolus as I have required for several years to prevent my blood sugar from rising before I eat breakfast. My daytime BG’s have been more stable with fewer corrections required.

Untethered Regimen 2016

Why is it working so well? Magic, maybe. Actually I think that Lantus is providing a more stable foundation than the fluctuating pump rates I was previously using. I wonder if I have been experiencing pooling of insulin while asleep and that is not happening with Lantus. I have definitely been having itchy pump sites and even a few infections in recent months so maybe my insulin absorption has not been good. I suspect that whatever peak Lantus may have is matching up with my need for increased insulin in the early morning. Maybe I am just paying more attention to my diabetes and making better decisions over the things that I can control.

The fact is that although I don’t completely understand why, the untethered approach is working for me right now. When I wrote about this regimen previously, I was either using it temporarily for a beach vacation or calling it an “experiment.” I have a different feeling this time and can see it being a permanent change. Rather than feeling burdened by the scheduled Lantus injection, I feel a weird sort of freedom as BG numbers have been more consistent and less of a bother.

After having had Type 1 diabetes for almost 40 years, you’d think that I would have long ago given up on improving my diabetes care. I guess I’m just hard-headed or stupidly optimistic. Or maybe I just need to try new things to escape the boredom of a relentless day-to-day chronic illness. Whatever. The untethered regimen is working for me right now and that’s my story.

If you’re interested in learning more about the untethered regimen, check out the posts listed below.

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take time to investigate different ways of eating and alternative ways of dosing your insulin. And no matter what, keep testing your blood sugar and always carry glucose tabs:-)

*** Related Posts ***

Untethered at the Beach

The Grouch is Back!

The Lantus Experiment Part 1

The Lantus Experiment Part 2

My Blue Ribbon First Place Change

Posted on May 14, 2015 by Laddie

6th Annual Diabetes Blog Week

Today’s Topic: Today let’s talk about changes, in one or two ways. Either tell us what you’d most like to see changed about diabetes, in any way. This can be management tools, devices, medications, people’s perceptions, your own feelings – anything at all that you feel could use changing. OR reflect back on some changes you or your loved one have seen or been through since being diagnosed with diabetes. Were they expected or did they surprise you? To read all of the other posts in this category, click here.

Having been diagnosed with diabetes in 1976, I have experienced a huge number of changes. Some, such as the advent of home blood glucose meters, were so long ago that I don’t remember the effect on me or my diabetes care. Others, such as my insulin pump, greatly increased my quality of life but didn’t improve my A1c.

By far the biggest improvement in my diabetes care as tracked by the change in my A1c and maybe in the stability of my blood sugars was the addition of Lantus to my diabetes regimen. Those of you who were diagnosed after the days of NPH missed out on the rollercoaster peaks and valleys of this “Not Particularly Helpful” insulin. There were definite benefits to NPH such as rarely needing a shot for lunch and getting to eat bolus-free candy bars at 4:30 PM in order to make it to dinner without a paramedic visit. But it was an intermediate-acting insulin that was slow to start working and then hit with a vengeance 6-9 hours after injection. The most difficult thing about NPH was its unpredictable variability from day to day.

Lantus was introduced in the United States in May 2001. At that point I was seeing an endocrinologist whom I liked a lot and was/still is quite renown in the world of diabetes. I remember one of my last appointments with him. He looked at my A1c and BG records (using a regimen of NPH, Regular, and Humalog insulins) and said something like: “You’re doing great and seem to be able to get anything to work. Keep doing what you’re doing and let’s not make any changes.” Soon after this appointment I left this endo’s practice for insurance reasons and switched to an internal medicine doctor as required for an endocrinology referral in my new network. At my first appointment with the Lantus First Place new doctor, he looked at my medications and said something like: “Why in the world are you still on NPH and not taking Lantus?” I was far from a proactive patient in those days and probably had never heard of Lantus.

I started on Lantus immediately and four months later, my A1c had dropped 1.7 points from my test 5 months earlier. Even more amazingly, my A1c was 2.5 points lower than the test of 9 months previous. I had also lost the ten pounds that I had gained in my perimenopause 40’s. So much for an endocrinologist versus an internal medicine doctor…. I got some of my best diabetes care ever from this internal medicine doctor and did not return to an endocrinologist until several years later when I chose to begin using an insulin pump.

Lantus is not perfect by any means and these days many Type 1’s take two to three injections a day rather than the 2001 “promised land” of one injection a day. I am a very happy pumper in 2015 but know that if I had to go back to a regimen of Lantus/Levemir and Novolog/Humalog/Apidra, I would be totally fine. The major change would be that I would have to become comfortable injecting mealtime insulin in front of other people and probably take several injections of Lantus/Levemir per day.

I have decided to negotiate with Medicare who will be my insurer in 23 months. If Medicare will fund my Dexcom CGM, I promise to go back to injections and probably save the insurer money. Unfortunately under current regulations, that idea is a pipe dream and I will continue to pump and save my pennies to personally fund my Dexcom.

One thing that I will not do is to go back to NPH. Unless that is my only choice….

The Lantus Experiment Part 2

Posted on January 13, 2015 by Laddie

My previous blogpost about my Lantus experiment ended with a hint that the story was not over when I returned to a pump-only regimen. So what happened?

A week and a half after quitting Lantus, I had one of those middle-of-the-night diabetes fiascoes that we all hate. My Dexcom CGM buzzed me at about midnight and I corrected a high that seemed odd but not unprecedented. 3 hours later Dex screamed that my BG was 381. After confirming the number with my meter, I gave a correction bolus by syringe. Exhausted and nauseous, I filled a new reservoir and inserted a new infusion set. Mind you, this was all happening at 3:00AM. Dex_Dec14

Upon priming the tubing, I saw insulin flood out of the plastic connector piece rather than drip from the metal needle. I had accidentally attached the old tubing and immediately understood my sky-high BG. I attached the correct tubing, primed, and went back to sleep. As is typical after correcting Himalayan highs, I woke up to a low of 51 at 7:00AM.

I was mad. I was frustrated. I was angry at myself and exasperated with the devil that we call Type 1 diabetes. I decided to go back to the untethered regimen. Big deal if I was stressed by cell phone alarms. It was time to suck it up and use an insulin regimen that would protect me from “not my fault” pump problems.

I reactivated the cell phone alarms for 7:30AM and 8:30PM. To correct the problems that I had with only infusing 0.1 units per hour by pump, I doubled the pump basal rate to an average of 0.2 units per hour. Using the original Lantus doses from late November, I was taking a much larger amount of basal than in recent years. Because it was holiday time with lots of food, alcohol, and stress, the higher basal worked fine. Some people believe that there is one “nirvana” basal rate. My opinion is that it just needs to be in the ballpark because every day is different and my ideal insulin dose is always a moving target.

So I was back on Lantus. Blood sugars were fine, but not spectacular. I tend to do really great at first whenever I make a major change in my insulin regimen. If I switch insulin brands, I often go low as though the new insulin is magically potent. Then after a week or two, things get back to normal. Similarly the addition of Lantus initially made my morning numbers incredibly stable, but during this second experiment I began seeing the return of a few unpredictable BG excursions.

I always wonder if my body actually reacts to changes in insulin or hardware in a physical, measurable way. Or is it all psychological and I just get better results because I pay more attention to my diabetes and make better choices on food and other controllable factors? Either way I will always be optimistic that there is something better out there and I will always keep trying new things. If nothing else, these experiments alleviate some of the daily boredom of living with diabetes.

Ten days ago I ditched Lantus again. I hated the cell phone alarms and was actually waking up in the night concerned that I would miss the morning alarm. After pumping for ten years, I had no confidence that I would remember two injections a day without reminders. In general on Lantus I had pretty good numbers except for poor food/drink decisions and a couple of “WTF” BG excursions. But in the end it wasn’t hugely different from a pump regimen.

Summary: I am back on my pump 100%. As outlined in My Lantus Experiment Part 1, there are many advantages to using Lantus or Levemir with a pump. However, at the moment I just can’t live in that world. That doesn’t mean that I won’t try it again someday. I will definitely continue to use Lantus as a pump supplement on beach and lake vacations as I have in the past. But for now the mental stress and “diabetes burden” of using Lantus are just not worth the slight improvement in my BG numbers.

*****

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take some time to investigate different diet plans and alternative ways of dosing your insulin. And no matter what, test your blood sugar often and always carry glucose tabs:-)

The Lantus Experiment Part 1

Posted on January 8, 2015 by Laddie

In a recent blogpost I wrote about my plans to experiment with using Lantus along with my pump. Although unusual, this is not a novel idea and is described by Dr. Steve Edelman in a 2004 article as the untethered regimen.

Starting in late November I used Lantus in tandem with my pump for two weeks. Although there were measurable benefits to injecting part of my basal, there were some definite negatives that were specific to my insulin requirements and the type of pump that I use. There were also a few things such as ease of use and expense that demanded consideration.

I started the trial by giving about 75% of my total basal split between two injections of Lantus: one at 7:00AM and the other at 8:30PM. There was nothing scientific about that except those were convenient times and I wanted any Lantus overlap to be first thing in the morning which is a problematic time for me. The balance of my basal was programmed into my pump with a little less through the night and a little more in the morning and evenings.

Let’s start with the positives. For the first couple of days I felt that my blood sugar between meals and overnight was more stable than it had been in ages. The most noticeable effect was in the mornings before breakfast. I often struggle with my BG starting to rise the second I get out of bed. It is not an easy basal fix because I tend to go low in the dawn hours before getting up. Sometimes I take a bolus right after getting up and that helps. But sometimes that bolus makes me go low. And other times I have already started to go high and struggle to get back on track even with boatloads of insulin. With the slight overlap of Lantus at this time, my BG remained stable almost every day until I chose to eat. It was a wonderful result.

The addition of Lantus also minimized BG rises after changing infusion sets. Set changes tend to be a problem for me even though I’ve tried lots of the tricks of the trade to avoid that: extra prime, never change sets in the morning, leave old site in, put new site in a few hours before using, and increase basal rates for several hours. I have never found anything that works every time. Of course nothing works every time with diabetes….

Now for some negatives.

At this stage in my life my basal rates are extremely low. After taking 75% of my basal by injection, I was left with only an average of 0.1 units per hour to be delivered by pump. The total of Lantus and Novolog ended up being a slight basal increase for me and maybe that is the reason I felt as though my BG levels were more stable.

The first problem I had with the untethered regimen was with temporary basal rates which I use on a regular basis. Unlike my previous Medtronic pumps where you can set temp basals either to a specific amount or by a percentage change, the Animas Ping only allows percentage adjustments. With a 0.1 hourly rate, it was difficult to make meaningful changes to my total basal. As I thought of insulin adjustments for my winter hiking excursions, even if I set my pump basal to Off, a reduction of 0.1 per hour might not be sufficient.

Another result of the extremely low basal rates on the pump was that it lost prime three times during the two week period. (Losing prime is an extremely annoying problem with Animas pumps and results in no insulin delivery until you correct the problem.) If you are in the middle of Target, you don’t really want to reach down your pants to unhook your tubing to re-prime the pump. And that is if you’re lucky enough to hear the musical chime that the pump is no longer delivering insulin. Technically some children use basal rates as low as 0.1/hour and the pump shouldn’t have lost its prime. But it did with both of the reservoirs that I used.

My Lantus Experiment_1

After a few days I began to have daytime lows probably because of the increased basals. So I reduced the Lantus by one unit. Then a few days later I tried another reduction and decided to take it all at night and none in the morning. I increased my pump rates to compensate for the reduction in Lantus. Very quickly I lost the benefits that had been provided by two injections of Lantus. Frankly that means that I didn’t have a clue what was going on anymore.

Although I do not have insurance problems buying both Lantus and pump supplies, it is certainly a more expensive regimen and could be considered to be “double dipping.” Many people justify a pump purchase by indicating that long-acting insulin can’t be customized to fit their basal needs. So here I am saying that the pump by itself isn’t doing the job and I need to add Lantus to the mix….

I also got to the point that the addition of two Lantus injections and the corresponding cell phone alarms added too much complexity and regimentation to my life. Diabetes takes up a huge chunk of my brain power already and I don’t need more nagging demands from it.

So I decided to go back on the pump full-time after the 2-week experiment. I was back to where I was before the experiment. But not exactly. I suspect that increased basal rates were part of the reason I benefited early on and my basal rates are set slightly higher than before. But not a lot because I am trying to avoid lows.

Try not to go too high. Try not to go too low. That’s Type 1 diabetes in a nutshell. Not much has changed, I guess….

This should be the end of the story, but it is not. Please stay tuned for the next installment of the Lantus experiment.

*****

Disclaimer: Nothing I say here should be construed as medical advice and please do not change your insulin regimen without consulting your medical team. At the same time remember that diabetes is a life-long science experiment (Thank-you Ginger Viera!). When things aren’t going well, take some time to investigate different diet plans and alternative ways of dosing your insulin. And no matter what, test your blood sugar often and always carry glucose tabs:-)

Untethered at the Beach

Posted on July 1, 2013 by Laddie

My summer beach vacation is approaching and I have already started a list of to-do’s, must-haves, and don’t-forgets. Like most people with Type 1, I pack a double or triple supply of pump and CGM accessories, test strips, Novolog insulin, and all of the other paraphernalia needed to care for my diabetes.

I don’t normally keep long-acting insulin (Lantus or Levemir) at home as a back-up for my pump because I feel comfortable with an active and easily-filled prescription at a national chain pharmacy. But when I go on vacation in a remote location or out of the country, I always take syringes and a vial of Lantus with me. I could also take a vacation loaner pump from Animas, but for short trips I don’t bother.

Although my Animas Ping is technically waterproof, I don’t like to wear it in the ocean for fear a rogue wave might rip it off and send it down to Davy Jones’ locker. Even in a pool, I don’t want to deal with the consequences of water intrusion while I’m away from home. Because of the fear of theft, I would never leave my expensive medical device in a cooler on the beach or near the pool. But at the same time, I don’t want to abandon the convenience and precision of my pump for mealtime and correction boluses. And I cannot be without basal insulin for more than an hour without hard-to-correct blood glucose excursions.

My solution for beach and lake vacations is to use the untethered regimen for my insulin. The untethered approach involves taking about 75% of my basal insulin by daily injections of Lantus (or Levemir) and using the pump for the rest of my basal and for most or all of my boluses. The advantage of this is that it allows me to leave my pump safely in my hotel room or lake cabin for hours at a time because most of my basal requirements are being met by the Lantus injection. The advantage of having my pump cover part of my basals is that I can program a bump in my basal rates during the pre-dawn hours. Also, IMO it is better not to suspend the pump for hours on end so I have a pump pattern giving me a constant 25% of my basal needs to supplement my Lantus injection. Some of this basal goes down the drain when I am not wearing the pump, but with my increased activity all day long, I actually don’t need it.

If I am going to have a daylong outing with required boluses of fast-acting insulin, I carry syringes and a vial of Novolog in a Frio case or even more conveniently, take along a Novolog pen. But on this vacation I know that I will be close to the hotel all of the time and won’t need that option.

The best explanation of the untethered regimen can be found in a 2004 article by Steve Edelman. Although I only use this regimen on vacation, there are others who use it every weekend or athletes who use it all of the time.

I was motivated to write this post after reading a 6/27/13 blogpost by Sarah Kaye Sugabetic.me in which she describes how she juggles the use of her Ping pump along with her Omnipod. She states that the Omnipod is great for POOL TIME and I agree that a Pod would be perfect for beach and lake vacations. Unfortunately my insurance company is not going to pay for a second pump system just so that I can swim and snorkel tubeless a few days a year. Sarah has also been spreading the idea of painting her Pods with nail polish and maybe my insurance will approve them because they are a fun fashion accessory in addition to being a life-saving device:)

In the past the untethered regimen has worked well for me on water vacations and I expect the same success this year. It is also a reminder that there are creative ways to increase the flexibility of our diabetes tools by thinking outside the box.