Aaand relax! Thoughts on the REPOSE trial

I've been watching Twitter with some interest today, following a conversation about a recent piece of research published by top-notch diabetes Doc, Sheffield's Dr Simon Heller.

I first heard of the REPOSE study (Relative Effectiveness of Pumps Over MDI and Structured Education) in 2016 when I was able to sneak into the Diabetes UK Professional Conference, where Dr Heller published some of the early findings. It has now been formally reviewed and published in full and, as much as I am able to understand it, I find it fascinating reading.

If you are interested, you can read the study here: http://www.bmj.com/content/356/bmj.j1285

The intention of the study was to evaluate whether insulin pumps or multiple daily injections (MDI) gave the better outcomes for people living with type 1 diabetes who have received comparable training and support. Essentially they took over 300 people, spread across multiple centres almost all of whom had HbA1c results over 7.5% and offered them structured education/training in intensive insulin therapy. Of those that undertook the training (267) the study then followed 260 people over 2 years to see what changed. Of the study group, the pump vs MDI split was approx 50:50.

What did it show?
Here are some of the results that caught my eye...

• Supporting people with effective, detailed structured-education/learning/training* in the complexities of managing type 1 diabetes improves outcomes whatever method people use to deliver their insulin (* delete the phrase/s which annoy you the most)
• On average people do a little better on insulin pumps (-0.85% with pump treatment and -0.42% for MDI)
• When results are adjusted for differences which could have skewed the data, the pump 'win' was pretty modest at around an extra -0.25% (-2.7 mmol/mol) reduction in A1c for pump users vs the MDI group - the averages may, of course, hide significant individual variation
• Pump users additionally scored better for 'quality of life' and 'treatment satisfaction'

What I find interesting, reading between the lines, is that this study almost exactly replicates my own meandering journey towards insulin pump therapy. This whole blogging endeavour sprang out of a non-Wittertainment related 'unfortunate event' which acted as a catalyst for me to re-assess my own relationship with type 1. Chiefly that reassessment was that I was nothing like as good at dealing with it as I was allowing myself to think. I then went through a period of significant re-education, not by attending a formal course, but by my own experiments and learning from others living with T1D, many of whom were using updated intensive-insulin-therapy-type approaches. After much work, and many successes (including a reduction in A1c and elimination of severe hypoglycaemia) I realised that I had reached the limit of my MDI skills, and if I wanted to improve further - which in my case meant more or less maintaining HbA1c, but further reducing mild hypoglycaemia and glucose variability, then the next step for me was an insulin pump.

The small irony is that I had been offered an insulin pump repeatedly for going on 5 years at that time, but had never liked the idea. In fact, looking back, I think if I'd accepted a pump in the years before we started writing this blog, and before I had discovered the #doc - I am really not sure whether it would have done anything much for me. Or whether I would have just have tried it for a bit and then stopped using it out of frustration.

No magic bullet
One of my take-aways from the REPOSE trial is that insulin pumps (or any other diabetes technology for that matter) are never going to entirely 'fix' things. This was certainly one of the things that put me off pump therapy for years. If many of my errant results were down to 'user-errors' of judgement, I reasoned, what difference could it make whether that 2u, 3u, 4u dose was delivered by syringe, insulin pen or pump/cannula. It's pretty obvious really - or at least it should be - but a lot of the potential power and effectiveness of insulin pump therapy comes down to the way an individual thinks about their diabetes management. The techniques they use, the strategies they have been given to review and adjust on an ongoing basis. I attended a pump users event when I had only been using Artoo for a few months and was slightly shocked to meet people who had been using insulin pumps for years but had never used (or wanted to use) the combo/dual/square/extended bolus options. It may be that they didn't need to, or that they had never been shown how to. But the lack of curiosity was a genuine surprise.

Not for everyone, and not second best
It is all too easy inside the hothouse of the 'Twitter bubble' to let yourself believe that absolutely everyone is using an insulin pump, full time CGM, Nightscout, and open-source cloud-based Artificial Pancreas algorithm. If you understand even half of that sentence, you will know exactly what I mean. But the simple truth of REPOSE is that insulin pumps are just one option, and they will suit a particular type of person, with a particular set of approaches at a particular time in their lives. That doesn't inherently make them better or worse, and it certainly doesn't make them right for everyone all the time. I loved this post by everyone's second favourite ex-teacher-Libre-wearing-cat-loving-warm-ball-of-GBDOC-loveliness Adrian Long about his continued love of multiple daily injections. People can do brilliantly on MDI, and people can do brilliantly on insulin pumps. What matters most is the support and information/training they have been given. Diabetes is going to be infuriating, uncooperative and apparently willfully disobedient whichever insulin delivery method people use. What I need, in order to face those daily frustrations is a comprehensive set of strategies, and individually tailored personalised goals to make small incremental improvements towards better outcomes. In addition a good deal of understanding and moral/psychological support goes a long way to help.

The shiny gadget effect, sticks and carrots
I do find myself wondering about the possible catalytical nature of a new piece of diabetes technology. For some people, and I think I might be one, having a shiny new diabetes toy (or the promise of one) can re-energise them into a new, more active relationship with their diabetes management. It may also be that people who have never really fancied attending Structured Education, for a whole host of reasons, may decide to take the plunge in order to get access to the technology they are hoping will help.

I'm not altogether sure how I feel about this if I am honest.

I would hope that REPOSE leads to more individualised, supportive care, rather than people being forced to unnecessarily attend officially endorsed education courses purely to box-tick the process (and add delay into the bargain). My own journey towards pump therapy was excellent in that regard. In the pre-pump assessment I was offered the education, but in conversation it was decided that I was already using exactly the techniques and strategies that the course advocated, so that it was entirely up to me whether I thought it would be beneficial or not. I would not want people who might excel at pump therapy to be put off by a hardline education requirement... but at the same time, my own experience tells me that often you don't know what you don't know. And that many people who attend diabetes education expecting very little from it actually leave the course with their relationship with their own diabetes utterly transformed.

Worries
My slight worry in all this, is not what this study actually shows, but more how it might potentially be interpreted and skim-read - short version: pumps expensive and not much better. The current guidance over the use of insulin pumps (and when people may additionally benefit from CGM) is pretty clear cut. And yet, some people in some places find themselves having to jump through interminable hoops, or simply get enquiries brushed off for having 'too good an HbA1c'.

Insulin pump therapy really does work well for some people, but it is expensive and the 'working well' does not come automatically. What I hope comes out of all this is a greater level of support and assistance both for pump users and MDI whizzes to aim for those elusive  and aspirational treatment targets alongside a decent quality of life and an avoidance of diabetes burnout. With finite NHS resources it is only right that these therapies are used effectively, and clearly a vital component of that is the support, education and encouragement that people receive, not just initially, but on an on-going basis.

Simply blindly chucking technology at T1 is never going to work.

I'd be interested in your thoughts on this trial, and how you think it might impact you in your journey with diabetes. Please do leave a comment below.

Collecting third pancreas object (C-3PO)

On Monday this week I popped in to see the lovely LJ the DSN at my Pump Clinic to collect my new pump. We had a nice chat and ran through the set up procedure before I pottered back with a little smile on my face.

You may remember that I posted about collecting my first insulin pump on 1st November 2011. Mostly for my own amusement, I began referring to my little robot counterpart as Artoo almost immediately (R2-P2 - replacement to pancreas #2, with MDI having been replacement to pancreas #1). Insulin pumps generally have a warranty period of 4 years, and my hospital were happy to replace my old pump fairly soon after that period had passed.

I could have chosen pretty much any of the currently available insulin pumps I think, and I have been tempted by the Animas Vibe for some time, though of course, that pump is now getting rather long in the tooth. Animas are well down the road of developing their next pump, but their new offering is not supposed to launch until perhaps 2017. I'm not sure exactly what the new Animas pump will bring to the table, though some sort of insulin-adjusting CGM integration seems to be rumoured. For the Vibe though, despite the attractions of the Dexcom tie-in I was wary of some irritating details of the bolus wizard on the Vibe and was very mindful of the absence of SmartGuard and potential alarm fatigue should funds permit some CGM usage for me.

Medtronic have timelined their new 'hybrid closed loop' MM670G for a similar period, perhaps 2017-2018 (which apparently will have a souped-up version of SmartGuard that aims to counteract highs as well as lows). In the end though, given my very positive experience of the MM640G, I decided to opt for that one. After all, those tantalising shiny, new, possibilities may not actually launch until more than half way through my next pump contract.

Given the almost stifling saturation of hype surrounding the UK launch of the new Star Wars film in 7 days time, I have not been able to resist revisiting that old joke again and so 'threepio' has become my new droid companion. Apparently he has a protocol for dodging hypos as well as communicating with moisture vaporators, but unless I have an unexpected windfall of 'galactic credits', sadly that particular function will remain little more than a futuristic fairytale.

In other, and slightly related news. I have already changed the Threepio's setup so that the homescreen displays as if I were using sensors. Partly this is because I prefer the look of the graph on it (even if the graph has almost no information to display) because of the irritating enormity of the '-.-- we have no fingerstick BG information to show you' dashed line. But also because that way I can use the graph data to track down the timing of my most recent bolus. Either as a visual ready-reckoner with the blue dot beneath the otherwise empty graph, or by drilling in to the graph view and scrolling back to see the exact time. Gathering the information this way takes only five clicks from 'standby' whereas getting the same information in the normal way from the 'status bar' takes seven.

Little things and all that.

Half unit Lantus insulin pen free on prescription - at last!

Thanks to Twitter's @ColonelBlightly for use of the pic.

About bloomin time!

I had heard about this some months ago, but then promptly forgot about it.

In April 2014 Sanofi launched the JuniorStar, a 1-30u insulin pen that can be used with Lantus (glargine) insulin and delivers doses in 0.5u increments. Woooo hooooo!

During my least years on MDI, wrestling Lantus into submission was more or less a full-time hobby. My basal requirement changes frequently in response to a wide range of factors (differences in general activity levels, warmer/cooler weather, or more frequently... just because it feels like it). On pump these tweaks are easier to manange, but more than once on Lantus I would seem to find myself in a position where a change of a whole unit up or down was just a bit too much, and I would have to settle for a Hobson's choice dose. It was particularly frustrating because of the 'some units are more equal than others' weirdness that I frequently see when my basal insulin dose is just a little bit out. A unit too much or too little of Lantus over 24 hours could leave me scoffing a massive stack of carbs to stave off relentless lows, or chasing high BGs with units and units of extra rapid-acting insulin corrections.

Diabetes is biology, not maths - and we can't always expect the numbers involved to behave in a predictable, logical way. This will be news to none of you.

So HURRAH to the fine French pharma folks for finally stepping up to the plate and launching a 0.5u pen. Mysteriously though Sanofi are yet another pharma company to market a half unit pen with a 'Junior' mindset (NovoNordisk did the same with the NovoPen Echo). It is as if only children could possibly find a use for half-unit increments. I can only hope that adult patients will not have difficulty* in accessing this potentially very useful addition to their Diabetes Gubbins stockpile.

EDIT: *Due to the ridiculous immediacy of the flow of information in the Twit-o-sphere, having posted this just a few minutes ago someone has already pointed out that the JuniorStar can be obtained directly from Sanofi, without the need to jump through tortuous prescription hoops and bothering your surgery/clinic. Simply contact the Sanofi helpline. Thanks to @davidcragg for the tip :)

The Big EDUAD Timesulin Giveaway!

I know... I know... You wait weeks for a post then three come along all at once!

Those of you with memories as bad as mine will doubtless have forgotten that I wrote some time ago about Timesulin, an ingenious replacement insulin pen cap. While not a fully equipped dose memory device the Timesulin is brilliant in that it does solve the main challenge of "Did I take my insulin just now or not?".

There are different versions to fit the pens for most popular UK insulins and the device works by displaying how long it has been since the last dose was taken. A quick glance will tell you whether it was 5 minutes or 4 hours and Hey Presto! No more missed-dose vs double-dose conundrums.

Cleverly the device does not need to you interact with it in order to register the injection, it 'knows' when you take the lid off the pen. And even more clever, it allows you to take a quick peek at how much insulin is still in the cartridge without registering that as a dose. Which is a great touch and kinda lets you know that at least some of the people who developed it have T1 themselves.

The lovely folks at Timesulin have offered us three, yes THREE! Timesulin caps to you, dear readers. If you would like a chance of winning one, please just send your name by the end of January to mike[at]everydayupsanddowns.co.uk or leave a comment below. I'll put all the names in a hat and draw the three lucky winners on 1st February 2014, then Timesulin will send you whichever cap suits your insulin free of charge.

Good eh!

So drop me an email and good luck :)

Lantus 0.5 unit pen at last - Pendiq Intelligent Insulin Pen

Lantus 0.5 unit pen at last - Pendiq

I *love* the DOC.

No really.

I absolutely love, love, *love* the DOC.

Just a quick glance at Twitter and I can be cheered, encouraged, supported, made to laugh and occasionally brought to tears all at once. Other times you go looking for some lightweight wit and wisdom, or just to see what folks are up to and suddenly discover some weighty new piece of research, campaign to fight for or better still... everyone's favourite diabetes benefit an exciting-sounding new gadget.

Before Artoo became my constant companion a couple of years ago, I wrote quite a few posts about Lantus basal insulin. I spent quite a bit of time trying to wrestle Lantus into submission, and eventually we got to the stage where we muddled along bearably, but it's fair to say that one of my main motivators for starting pump therapy was to get 'proper' basal coverage, that accurately reflected the ebb and flow of my body's rhythms over a 24 hour period.

Comparing notes with other users it seems I was not the only person to be frustrated by Sanofi's rather less than enthusiastic approach to insulin delivery. Most of the injection pens that fitted Lantus were, frankly, nasty. And none of them offered doses in increments smaller than 1 unit. This might be OK if you are on higher doses, but many T1s are quite sensitive to insulin. I'm not quite sure how small children cope, for example. The minimum dose adjustment could well be a significant percentage of the total.

The other pen-related problem I had fixed around the same time related to my terrible memory. It may be hard to believe it you do not live with diabetes yourself, but after a few thousand injections they can become so automatic that you barely think about them. Sometimes you have absolutely no idea whether you have injected your dose or not. I changed bolus (mealtime) insulin to Humalog to get hold of a pen with a 'dose memory' the Humapen Memoir so that if I was ever unsure I had some means of checking that didn't involve me having to write something down, which I was just as likely to forget to do... Or possibly even to remember to write it down, but then forget the actual injection. See what I mean about my memory? Hopeless! Sadly the Humapen Memoir has since been taken off the market and it looks like its development has been abandoned. So now the only memory-enabled pen available on prescription in the UK is the NovoPen Echo.

But...

Thanks to a Twitter conversation I chanced upon earlier this week, I now know there is an alternative. And a very interesting alternative it looks to be too.

Enter Pendiq, the Intelligent Insulin Pen

Pendiq is a new breed of injection device from Germany initially launched in 2011 and relaunched in 2012. Such is the ruthless efficiency of German engineering that this pen boasts not just 0.5u accuracy but increments of 0.1u (from 0.5u upwards). Delivery is unlike any other pen I am aware of - dial up the dose on the display, press the button and a precision motor delivers the insulin at 2/u per second. The pen stores and displays around 2 months worth of injection doses and timings on an LCD screen and the website boasts all sorts of download opportunities and compatibility with logging software such as SiDiary. The battery is rechargeable and the device seems to be compatible with 'standard' insulin pen needles. The Pendiq is compatible with Lilly and Sanofi-Aventis insulins, which means that both Lantus and Humalog doses are now available on MDI in 0.1u dose increments. Heck you can even choose from five funky colours!

Unfortunately there is a snag. Isn't there always? It seems the Pendiq is not currently available on prescription in the UK. It looks like you can buy it via the website, but with the shipping/delivery it will set you back almost €185 (around £150). So not cheap... by any means. You would also probably be wise to speak to your DSN/hospital/clinic to get there guidance if you were tempted to spring for one before you part with any cash.

If you'd like more information, visit www.pendiq.com

DBlog Week Day 6 : Compare and contrast

Saturday snapshot for day 6 of Diabetes Blog Week makes me think about the photo I posted this time last year.

At that stage I was still unsure how I felt about the prospect of an insulin pump - Would it help? What would it be like? How would it feel to live something attached 24 hours a day? This morning I was due a set change for Artoo. A year is a long time.

Face-off: MDI vs Pump

If you've not seen this film before, you should! Face/Off [DVD] [1997]

A couple of people who are considering going on an insulin pump were asking how I was getting on, how I was finding it and whether I thought it had made any difference.

An interesting question a little over 6 months into the experience.

Pump win(?): Fear of attachment
The first thing to say is that the nagging worries I still had about attachment when I wrote a few weeks after starting on a pump have long gone. I know some people feel at one with their robot pancreas almost immediately, but it took me a good few months before I reached the stage where I rarely thought about being hooked up to Artoo, and even when I did, it didn't worry me. Things like getting changed, where the sense of inconvenience lingered, no longer strike me as irritating. If you have just started on a pump, and the attachment still frustrates you, hang in there. Not everyone gets used to it in a few days. Allow yourself time to adapt to the new 'normal'. Wearing and using Artoo is now second nature. No problem with sleeping either.

Hugely unexpected pump win: Attachment
I think this bears repeating from my '2 month' post, partly because it was something I really didn't see coming. There have been many times since starting on a pump that being attached to Artoo 24/7 has given me back a feeling of spontaneity. Do you remember spontaneity? I'd pretty much forgotten about it myself too. That ability to just stop and have lunch there because you fancy it, rather than having to go back home because you weren't expecting to be out that long and didn't bring your kit. There have also been *no* times since November when we've had to stop the car at the end of the street, and run back to fetch my pencil case.

Pump win: Basal patterns
A properly flexible basal pattern was one of my main motivations to switch to a pump. Looking back, while on MDI my early morning 'fasting' reading of the day was more erratic than I realised at the time. Sometimes too high, sometimes too low. Only in a decent range say, between 3.9mmol/L (70mg/dl) and 7.5 (135), less than half the time (45% to be exact). Truth be known it's still wobblier than I'd like, but these days I get a decent first reading on two out of three days. That's a much cheerier start to the day for everyone at the breakfast table.

Pump win: Delivery options
I was invited to an evening arranged by Medtronic in March where pumps and pump therapy were discussed. It surprised me how many people had been on a pump for years but had never tried out different bolus patterns or temporary basal rates. If you are new to a pump I'd encourage you to get stuck in straight away. TBRs, dual and square wave boluses have more than lived up to my expectations. Many situations, like gardening and vacuuming which refused to play nicely for me on MDI have been more or less tamed by Artoo. I don't get it right all the time, but have a little 'cheat sheet' of notes for what seemed to work before to use as a basis for whatever I'm doing and I have avoided many many spikes and/or hypos since November.

MDI win: Infusion site failures
On the plus side set changes have become much easier and more automatic. They are a little more time consuming than a simple injection, but you do know roughly when they are due and can bring that forward/push that back slightly if it would come at an inconvenient time. The whole push-button dosing thing is so much quicker and easier than faffing about with a pen that my feeling is that I have a net gain of time spent/inconvenience endured dealing with diabetic rigmarole.

But. (and it's a biggie)...

I have had sites go wrong already. I still watch every set change carefully to make sure they have 'taken' properly. I had almost stopped being so paranoid, but two or three failures in quick succession have put me on my guard again. At least two cannulas have kinked on or after insertion so that insulin wasn't being infused properly. Not serious enough to get a 'low delivery' warning, but enough to cause a rise in BG levels. I had another site seemed to 'go off' at about 1.5 days. It had been fine, but suddenly stopped working as expected. I am putting these down to site issues because corrections did not behave properly, but as soon as the site was changed I was back on an even keel. I've also caught a big fat bubble in the tubing on at least two occasions when I've put Artoo back on after a shower/gym session - which makes me wonder if some odd but short lived rises in BG might be down to Artoo delivering 'bubble' rather than basal for an hour or two on other days. I check carefully every time I fill a reservoir and flick and fiddle until I am as sure as I can be that I have got all the bubbles out, but nevertheless I can still sometimes see a bubble in the reservoir at the next set change. These are not problems that you ever have with MDI. Even if you hit a dodgy site that is only going to be one out of the day's several injections. With Artoo all my eggs are in one basket. And sometimes the handle falls off the basket. I have had one-off levels on a pump higher than I've had for years on MDI, perhaps the highest since I was first diagnosed. And I've also tested positive for ketones since November - again not something I am used to. In all I've probably had to swap out maybe six sites since November. As a percentage of the total number of insertions it's not disastrous. but it's not ideal either.

MDI win: Injection site availability
Another part of this is the available site locations. I was never very adventurous on MDI, but I had far more area to play with in terms of a quick injection than is suitable to have something fixed to it for several days. I'm currently using sides and back for sites to give my abdomen a rest but have to be careful to find a spot with enough 'flesh' and some places end up being slightly uncomfortable when you lean on them/sit on them/risk getting them knocked out by waistband. In theory I could use my thighs, but there's not a lot of 'spare covering' there and most of the usable area seems to be right underneath my jeans pockets which I'm forever fishing stuff out of. I worry I'd just pull the site out when trying to get hold of my my keys.

But what of the results so far?
It's never very easy for me to spot how things are going from day to day. A couple of good (or bad) days on the trot and it can feel like I'm some sort of perpetual Diabetes Superhero/Catastrophe. Sometimes it feels like I've been having a problem for months, but looking back just a week or two and it becomes clear that it has only been a matter of days.

So I dug back through my records and picked some results to compare from three periods. Some old paper records from around the time we started writing this blog, some records towards the end of my time with the Accu-Chek Expert and some more recent ones with Artoo. I pulled 60 days of results to try to reduce the impact of a dodgy few weeks. I avoided holidays/Christmas or other challenging times of year and tried to pick a couple of 'normal' months for each. I knew things have been getting better for me in recent years, but I've not really compared and contrasted in this way before.

Testing frequency was roughly even in each case (between 7 and 8 times a day) and are made up of a mixture of waking, pre meal, post meal and bedtime tests.

The first thing that surprised me was how much improvement I had been able to make on my own with MDI, even before the help of the Expert. Due to an, ahem, administrative/back-up error I don't have a full 60 days immediately pre-Expert to compare, but even so, before Artoo the number of highs and lows were substantially improved.

Hypos - below 3.9 (70)
Old MDI was the worst with 20% of readings, the Expert reduced this to 10% of readings and Artoo has made a small improvement taking this down to 8.7% - clearly Artoo and I still have work to do here.

Hypos - below 3 (54)
The old MDI records really don't do well here, with almost half of all hypos coming in below the 3 (54) mark. Compared to what I'm used to in recent years it made uncomfortable viewing. Both the Expert and Artoo fare much better with 2.4% and 2% of all readings coming in at that level. Both with the Expert and with Artoo, none of these hypos have been 'nasties'. I can't remember the last time I had a really bad one it was so many years ago. I've been functioning, spotted them and able to treat them all myself. That may not have been the case with the old MDI records.

Highs - above 10 (180)
The same pattern of worse, slightly better, better again repeats here. Old MDI shows 19% of readings over 10, with the Expert that falls to 16% and reduces to 13% with Artoos assistance.

Highs - above 13 (234)
This is where Artoo really shines at the moment. Despite having subjected me to an occasional stratospheric BG with a dodgy set, in the 60 days of data Artoo only allowed 0.04% of readings to stray over 13. The Expert does surprisingly badly here with 6% while even old chaotic-style MDI scrapes in with 5%.

Averages and SD
While averages can hide a multitude of unpleasant detail, I think that here they do seem to suggest positive progression. The old MDI average was 6.8 (122) with an SD of 3.3 (59), the Expert improves this with a slightly higher average 7.2 (130) but reduced SD of 3.0 (54). Artoo though trumps them all with the joint lowest average 6.8 (122) and a significantly lower SD of 2.4 (43).

So is it worth it?
YES! Absolutely. The ways in which Artoo has made my diabetic life easier to control, more spontaneous and simpler to get along with far outweigh the remaining niggles I have about infusion sites. Is it like being non-diabetic? No of course not. Actually I have to watch myself not to feel downhearted if I don't have perfect levels all the time because some mad part of my brain thinks that in theory this ought to be possible now. Well unfortunately Diabetes is still incredibly annoying and has lost none of its ability to throw out the rulebook and move the goalposts for weeks at a time. I don't suppose it ever will.

I have an HbA1c coming up in the next few months. It will be interesting to see if there is an improvement - my first post-pump A1c showed an 0.5% increase and I'm hoping I might be able to match my previous MDI result but with fewer highs and lows into the bargain.

We shall see.

UPDATE: Regarding set failures - I wrote this some months later. Set changes

NovoPen Echo launches in the UK

Great news for forgetful diabetics in the UK...

Long-term readers (bless you, how ever have you managed it?) may recall that a couple of years ago I actually changed insulins (from NovoRapid to Humalog) because I was so fed up of my not being able to remember whether or not I had actually taken my mealtime insulin and/or which of the possible dose configurations I had finally settled on. At the time the only injection pen available in the UK which recorded doses was the Humapen Memoir. Had I lived in a different part of the world, there would have been no need to change insulins. The NovoPen Echo, which records doses and provides half units was already available at that time in the US. But not here. Cue general grumblings, outrage and sighing-and-rolling-of-eyes from a handful of discontented UK diabetics. Some even going so far as to launch that most effective of lobbying methods, a Facebook campaign-and-moan page.

Not without a whiff of irony, when I changed to a pump my DSN was a little wary of Humalog's reputation for crystallising in tubing so changed me back onto NovoRapid. It did strike me as very odd though that NovoNordisk would happily wave goodbye to any user of their insulin who wanted a pen with a memory in the UK, even though they had such a device available.

In the meantime Timesulin (a replacement cap which lets you know how long it was since your pen was last used) has launched and gone on sale in the UK. This tackles the main nagging worry of 'Erm... does anyone know if I jabbed before lunch?' and is compatible with a whole bunch of pens. Sadly though it can't track doses.

Well the wheels have turned. The Memoir pen has been taken out of circulation while Eli Lilly try to fix some battery problems and make other improvements. But it seems NovoNordisk have either a) come to their senses or b) jumped through whatever compliance hoops they needed to, because according to Kasper Kofod (Social Media Project Manager at Novo Nordisk A/S) the NovoPen Echo launched in the UK a week or two ago and is available from your local friendly DSN.

Hurrah!

Update/clarification: Initially the Echo was said to be available only for children. However I now understand that the NovoPen Echo is available to patients of any age. The NovoPen 5 (currently not available in the UK) which has the dose memory, a larger max dose but lacks the half unit may be released in the UK at some point in the future.

Timesulin - a pretty smart idea

Just came across 'Timesulin', which is a replacement cap for insulin pens which records the amount of time that has passed since the last injection.

As a person who actually changed insulins to get a 'Memoir' pen with a dose memory this simple solution to part of the problem ("Hang on... have I injected or not...") appeals to me. Since having the Memoir I know I often check to confirm the exact timing of doses. Sadly however the Memoir is currently unavailable and Novo Nordisk's Novopen Echo is still not scheduled for release in the UK. So at the moment there is just no MDI device that records the timings of your injections.

Enter 'Timesulin' an ingenious digital timer which can be used as a replacement cap for your existing insulin pen (currently only Kwikpen®, Flexpen®, Solostar® are supported). When you remove the pen cap to inject the timer resets to zero and begins to count up again. So by looking at the pen lid you can tell how many hours (or minutes) have passed since you last injected. Cleverly if you pop the pen lid off to check how much insulin is still in the cartridge (or whatever) the timer keeps counting. It only resets the timer if the cap stays off the pen for more than 8 seconds.

At the time of writing the Timesulin caps themselves are 'in the final phases of production' and are due to be available for purchase from mid-November 2011.

More details here: http://timesulin.com/

Would be very interested to hear from anyone who gets hold of one, and whether they found them useful. Leave us a comment below...

A little consistency would be nice

Here's a thing... And for once I'm not whining about trying to keep my blood glucose levels in range while attemping some semblance of a normal life.

There are quite a few insulin pens on the market, I think it's fair to say that some are nicer that others. Some offer half unit doses, others permit particularly large single doses. There are even those (actually just one in the UK right now until the NovoPen Echo is released) that automatically record recent timings and doses. There are prefilled disposable ones and more luxurious-feeling metal cased ones. Brightly coloured ones and grown up serious ones. You would think we diabetics would be happy.

However, aside from the fact that many of the pens are actually quite nasty (flimsy, plasticky affairs that feel rather less than reliable), there is something about their design that frustrates me intently. Because there is no consistency in the design of the pen cartridges, different insulins are only compatible with a tiny fraction of a pretty meagre range. There is, of course, no reason for this. Readers of a certain age will remember the development of Betamax and VHS video. After the early excitement of both formats, it became clear to the industry that all the electronics brands would need to produce players compatible with a single format. For many MDI users the paltry choice of available pens is little more than a minor irritation, but I read a forum thread recently where a doctor was looking for an pen device which was easy to use with one hand. Someone suggested a pen which had a spring-loaded delivery via a sliding switch (the Autopen 24), but because of the current limitations such a choice will limit the patient to particular insulins. On the other hand if you are on Lantus glargine and would benefit from half-unit doses there are simply no compatible pens on the market. There are half-unit pens available, but none that fit Lantus cartridges.

There is, as I say, no reason for this. Where formats are common (audio CD, DVD, USB) competition still exists, brands are still able to assert their own identities and strengths. It feels as though development of the pens is seen by the pharmaceutical giants as a bit of a bind. But these companies are investing (probably considerable) R&D budgets into the development of these devices. Wouldn't it make sense then to see the pens themselves as an opportunity in their own right. To make each pen compatible with all insulins on the market. To produce better/more solid/more stylish/more advanced/more [insert your own wish here] delivery devices to build relationships with insulin users. After all these are things we are using day in, day out.

So come on Big Pharma, how about a little consistency in insulin cartridge design. Then patients could match the best insulin for them with the injection pen that best suits their needs. Not too much to ask, surely?

Thanks for the Memoir-y

First of all a massive and sincere thank you to Dr D and his excellent team at the hospital in Bristol. For a number of years I stopped going to the hospital and was seen by the Diabetes Specialist Nurse at my GP surgery. However I've recently been asking all sorts of pointy questions about changing my treatment and they have referred me back to the Consultants clinic.

I went up today for a sort of annual-review lite. Having been reviewed earlier this year it was more a bit of a check-over and chance to catch up on changes over the last few years. Since February's trip to casualty I've been taking far more blood glucose readings, making far more notes and generally paying a lot more attention to my day-to-day diabetes goings-on. So I went armed with plenty of results to discuss and lots of questions.

I also went wanting to change my insulin. Well not in fact that, but I wanted to try the Memoir pen which doesn't fit NovoRapid cartridges and though it's a weird way round I wanted to try a pen that records my doses and timings more than I felt the need to stay on NovoRapid.

I was expecting a little reluctance to this tail-wagging-dog request. The pen is, after all only the device. It's what's in it that counts.

However I was massively impressed and very thankful for the way I was treated. They listened carefully to everything I had to say, gave thoughtful insights and suggestions, but at no point did I get the feeling that they had any kind of agenda. They were, in short, wholly on my side. In true NICE guidelines style I was included as an important partner in my Diabetes care.

So from this evening I'm on Humalog and the Memoir pen.

I'll let you know how I get on.

NovoPen with a memory please

My NovoPen 4 is great. It's an absolutely star piece of kit. Solid, nice-looking and reliable.

But about 5 years ago I had a brainwave.

What I need, I thought to myself, is an injection pen that automatically stores the doses and timings of recent injections and displays them on a little LCD screen on the pen.

That way when I'm varying the timing of doses (before/during/after meals) to match the activity curve of NovoRapid with the absorption of what I'm eating - and even more importantly when I'm splitting doses to phase the delivery over a longer time period (especially helpful for larger celebratory meals, or those higher in fat where absorption can often be significantly delayed) I won't forget what I'm up to. Recently as often as two or three times a month I've forgotten to inject at all (believing I'd done so already). Or even worse, double dosed. Not good.

Having looked around I've since found the Eli-Lilly 'Memoir' pen and I'm seriously considering changing insulins just to be able to have this facility - that's how useful I believe it would be to me.

So I've been on to NovoNordisk to ask them directly if they could get their R&D boffins on the case with a heartfelt plea. I was pleasantly surprised to get a very prompt and courteous email back... "Thank you for your message" they said... "very interesting and useful to get a users perspective...", "we'll send your request to our head office in Denmark..."

Just today I've discovered NovoPen 'Echo' due for launch later in 2010 in the US which has a little screen in the end. "Woo hoo!" you say? Well, er no. I'm afraid not. Sadly it's only being aimed at children with diabetes (ehhhhh?!) and I understand there is no plan to make the Echo available to adults in the UK market any time soon, if at all.

Not sure if anything will come of my appeal to NovoNordisk's better nature, but I hope it does. I've much preferred NovoPens to any other delivery device I've used.

Update: Thanks for the memoir-y