Afrezza & Tresiba Update

This post reflects on the positive impacts on my day-to-day life since switching to Afrezza and Tresiba, along with some new challenges. A simple mistake led to three weeks of terrible glucose results, and the cause took a while to track down.

The day after I have my best ever 24hr glucose result (see charts at bottom), my glucose levels began going out of control. Unexpected highs between meals led me to try increasing my basal dose. Then major lows began, so I started changing the time of dosing basal. My total daily dose of Afrezza dramatically increased. I even switched back to injectable bolus for two days to see if that would help.

When my basal cartridge ran out, I discovered what the problem was. I had accidentally refilled the pen with a Levemir cartridge. Both cartridges are green, and are in blank foil blister packs. The pen can also completely cover the label, depending on how the cartridge is rotated. I certainly won’t be making that mistake again.

Both cartridges have green rings and are in blank foil packs.

Both cartridges have green rings and are in blank foil packs.

When I restarted Tresiba, I dosed twice in the first 24 hours to try and speed up the transition. After the third dose, levels were returning to normal.

As troubleshooting this issue has consumed about three weeks, in the video I reflect on the positive impact that switching to Afrezza and Tresiba have had on my life so far. In addition, there are some new challenges that these treatments present.

Afrezza

All of the impracticalities of dosing insulin before a meal are gone. When I’ve eaten enough and I feel full, I now don’t have to force myself to finish the meal. If I want to share food I’m eating with someone else, I can offer it to them without having to explain that I have already had the insulin for everything that’s on my plate.

Cooking is a pleasure now I don’t need to weigh ingredients, or weigh dishes while serving. I no longer have to copy numbers from nutrition panels and look up web sites in order to perform a series of complex mathematical equations before every meal.

I am no longer constantly worrying about encountering another company like HelloFresh again, who provide diabetics with potentially lethal falsified carbohydrate data.

Previously, visiting friends for dinner required them listing all the ingredients and quantities for the meal before it was served. I avoided going to restaurants wherever possible to avoid the impossible task of dosing for unknown meals of unknown sizes being served at an unknown time. It’s an amazing feeling being relaxed for the first time in these settings.

However there are new challenges. Afrezza acts for a shorter length of time than injected insulins. Some fatty meals like pizza require split doses of injectable insulin. After about a year of trial and error I settled on injecting two doses five hours apart. Without a CGM, I don’t have alerts for when my glucose is going out of range so identifying the optimum timings using Afrezza will take some time. I hope to systematically develop some simple guidelines for dosing to help out others that are not using CGMs.

Tresiba

For the first time in my life, I can sleep in on weekends without glucose levels suffering. Many years ago I dosed Lantus once daily in the evening which allowed me to sleep in, however it was unable to last 24 hours so levels were rising in the evenings.

With Lantus and Levemir twice daily I had to return home at the same time every evening for my second dose, ruling out spontaneous social events. It’s liberating to be able to chose when I want to go home, rather than have my basal always counting down the minutes.

So far, I have not observed any detectable difference if I dose one morning and then wait until the next night. As summer approaches here, I am sure I will have more opportunities to test out the limits of Tresiba’s flexible dose spacing.

The only downside so far is managing the different basal requirements I have on the weekend. I imagine this was a problem before, but is highly visible now I’m using the FreeStyle Libre.

During the week, I eat three times a day and am less active that I am on weekends where I tend to eat twice daily. My solution so far is to eat or drink something sugary while doing extended physical activity like working in the garden.

23 Sep - Best Results. Note the Interquartile Range.

23 Sep – Best Ever 24hr Period. Note the tight interquartile range.

FreeStyle Libre Data

23 Sep – FreeStyle Libre Data

Afrezza: Timing is Everything

This video covers my experiences with Afrezza dose timing, and why I think timing is the most important aspect of dosing – even more important than the size.

I have previously mentioned the importance of dosage timing when taking Afrezza, but have not gone into much detail. So I thought it would be worthwhile talking about what I have learned so far about timing.

As a general rule, I dose about 10 minutes after I start eating, which is before my glucose levels start to rise from the meal. As I mention in the video, the best time to dose seems to depend on the fat content of the meal. And for some high fat meals, a follow up dose of Afrezza is neccesary.

I have found the same rule also applies if a follow-up dose is required. It is important to have the follow-up dose before the levels begin to rise out of range. If I had a CGM with alerts, I would use this to notify me as soon as it levels began to increase. That way I wouldn’t miss the optimum time for the follow-up.

It is worth remembering that much, much more Afrezza is needed to correct high glucose levels than to cover meals. As the video details, if I wait too long to dose, the dose required may be four times higher!

– Matt

Update: Although timing is important when using Afrezza, the above high in the graph and the hypo referred to in the video were the result of unintentionally replacing a Tresiba cartridge with a Levemir cartridge.

The hypo wouldn’t have occurred had I been taking the correct dose of either basal. Similarly, the high in the graph is during a period of no basal coverage. See this post for more details of what happened.

Afrezza with Tresiba: A Perfect Match?

This video discusses my switch to the new Tresiba basal insulin for use with Afrezza. Is this ultralong-acting basal the perfect match for the ultrarapid-acting Afrezza?

After testing 18 different dose permutations of Lantus, I remained disappointed with my glucose levels between meals. Switching to Levemir improved things greatly, but introduced new problems each day.

A new basal called Toujeo contains identical ingredients to Lantus and still seems to be inconsistent in its release.  This study observed 50 people for 2 days on Toujeo. This figure shows that Toujeo’s release sometimes varied considerably between the two days and did not always lower glucose steadily throughout the day – its activity sometimes spiked or ran out.

That study was by the manufacturer of Toujeo and Lantus. Another study by its competitor showed that Lantus was over 300% more variable in its release over 24 hours than the new ultralong acting basal Tresiba.

They calculated the risk of experiencing more than double the usual maximum effect on any given day (potential hypoglycaemia) was <0.1% for Tresiba and 11% for Lantus. That’s a random hypo every 9 days on average! Plus random highs every 5.8 days on average. That’s the average for the whole group of people – some were far, far worse.

So I switched to Tresiba to see how it works with Afrezza.  It comes with many other advantages, and eliminates some routines that have ruled my life for 24 years!

The number of doses of Afrezza I use each day is reduced, including the dose I previously needed as soon as I woke up. Additionally, all of the problems introduced with Levemir are gone. It’s early days, but here’s a picture of where I’m at now.

Now that my basal is almost fully optimised, I can soon work on finding the optimal strategy for timing and dosing of Afrezza.

UPDATE: Tresiba has just received FDA approval in the US. Still waiting for Australian TGA approval.

Afrezza + Tresiba

It’s early days for Tresiba, but so far I’m very impressed.

Afrezza and Levemir

This video update covers my switch to Levemir, and its nifty pen. Scroll down for my charts comparing the two.

The high variability of Lantus prevented me from further optimising my basal dose, and the issue makes some consider it dangerous.

So I decided to switch to Levemir. My experience with Levemir mirrors that of this user in the UK, who finds “the duration of the Levemir is frustrating, as the amount taken in each of the two injections is not quite enough to get me through a twelve hour duration“. Further, I need to be cautious during its peak.

As you can see in the video, the NovoPen Echo is very cool. However my third pen has already failed once already, and I hope it’s the top display that’s wrong and not the one on the side. Novo has asked me to send in the pens to investigate.

If I can get a pen I can trust, I would like to pair the NovoPen Echo with the longer acting, flat profile Tresiba basal (not yet available in Australia).

Update: I have since changed basal insulin to Tresiba. Novo has sent two replacement pens, and I await the results of their investigation into the faults.

The goalposts have shifted a lot in a couple of weeks.

The goalposts have certainly shifted a lot in a couple of weeks.

Afrezza and Lantus doses

This video is about basal insulin and the timing of Afrezza doses.

I wish I had known that Afrezza needed a basal dose adjustment, as previous insulins were pretty forgiving. Here’s an image which sums it up:

Afrezza and Excessive Lantus Doses

My previous Lantus dose when using Apidra was 9u in the morning and 10u in the evening, and I continued with that when starting Afrezza. But my glucose always seemed high, even though I was inhaling buckets of the stuff.

I thought it was that I needed more basal, but counterintuitively that made it even worse. I wanted to keep increasing it, but my partner insisted that lowering it might help. I said that’s impossible. But somehow it worked.

Later posts will cover optimising the Lantus dose split, switching to the more stable Levemir and Tresiba, and will explain what caused those blood glucose peaks.

Update: I later switched to Levemir, and am now using Afrezza with the amazing new basal Tresiba. I will soon post more info on these changes. This link will be updated once I have collected more data.