Changing insulin prescription for looping (DIY APS)

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NocturnalCat

NocturnalCat

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Relationship to Diabetes
Type 1
Hello everyone,
I have been DIY looping for almost a month now, but I've had recommendations in several other online communities to change the insulin I use to improve glucose control. I'm current using Novorapid which is prescribed to me by the NHS, I think. I'd like to change to either Fiasp or preferably Lyumjev because they are much faster acting and therefore safer in a closed loop system.

So my main question is, how can I convince my Diabetic nurse to change my prescription to a different insulin? I know the two alternative insulins are compatible with my pump, but I'm just wondering if I will need to provide an official reason for wanting to change insulin. Is it ok that I'm using a DIY system and will they accept this as a reason to change?

Also just another thing, I have all of my data synced to Nightscout (insulin basal, corrections and cgm data). I know my diabetes clinic have access to the cgm data, but I think it would be beneficial if they had access to my Nightscout data because there's more info. Are they allowed to do this? My nurse has mentioned DIY looping before, but I don't know if she would encourage it. Plus I haven't told my parents yet because they often don't think about my health and would likely forbid the use of this just because it doesn't have FDA approval without looking into the evidence (my predicted hba1c in xdrip is now 40 mmol/mol after using this system for a month). I'll be 18 soon anyway, so preferably I'll be keeping this a secret until I can move out.

Thanks
 
Welcome to the forum @NocturnalCat

When Fiasp was the new kid on the block I discussed the challenges I was having with Novo(not very)Rapid, and some of the workarounds I was using, which had their own risks.

I think if you can go in with a plan that you've obviously thought through then it makes it easier for the DSN or consultant to consider your request in a positive light.

As for Nightscout - the best bet is to talk with your clinic. FDA guidance doesn't apply in the UK, but many pump centres in the UK are very familiar with the 'we are not waiting' movement and have protocols for supporting people who are interested in trying that approach.

Do try to keep the lines of communication open with your parents. They care about you, and will naturally worry, but it's good to find ways to be open with those who love you.
 
Thank you that's reassuring. I was mostly just concerned about the potential response I could get for using a DIY solution.

Please could you let me know the general process that happens when I change insulin types? Do they need to assess my diabetes management first or is it just as simple as asking to change?
 
I can only speak from my own experience.

Over the years occasionally my clinic have suggested switching to a different insulin to see if it helped with a challenge I was facing, eg "as you've been having those overnight hypos, perhaps this basal which has a flatter profile may help..."

And sometimes it has been me requesting the change. "I keep forgetting whether I've jabbed or not, can I switch to Humalog so that I can get the memoir pen which records my most recent dose" (this was before Novo Nordisk offered a pen with a memory/screen.

My clinic have then advised me to keep a closer eye on levels than normal, as insulins are not necessarily a like-for-like switch. And arranged a follow-up appointment or two to see how things were going after a week or month.

There's a survey here for support for Open Source hybrid closed loops in various clinical settings which might help you understand how cautious your clinic are likely to be. (Many clinicians are cautious or feel they lack knowledge, but about half think they would opt for the system if they themselves lived with T1, and several high-profile Endos do indeed use open source systems)

link.springer.com

Association of British Clinical Diabetologists, Diabetes Technology Network UK and Association of Children’s Diabetes Clinicians Survey of UK Healthcare Professional Attitudes Towards Open-Source Automated Insulin Delivery Systems - Diabetes Therapy

Introduction Automated insulin delivery (AID) systems can enable improved glycaemic outcomes with reduced mental burden. Open-source AID (OS-AID) systems overcome some of the developmental and access barriers enabling a wider use of these systems. Limited data are available on healthcare...
link.springer.com link.springer.com
 
I requested a change to Fiasp from NR because I was having to prebolus 75 mins in advance of breakfast and sometimes I got side tracked and hypoed. I then asked to switch back to NR 3 months later because I was struggling to make Fiasp work for me. I then asked to do another trial of Fiasp a year later, for the same reason as before, but felt I was in a better position to tackle the challenge. I promised myself that I would give it a year this time and it was just as well I did, because 3 months later I would happily have thrown in the towel and gone back to NR, but after another few weeks I made a breakthrough with it. I don't love Fiasp and it has it's quirks but I can make it work for me. I do need more of it than NR though and I have to be heavy handed with it when doing corrections. Of course I am on MDI, so this may not be helpful experience to you unofficially looping with a pump but I found my consultant very open to me requesting changes provided that I could demonstrate the problem that I was having and how I hoped the change would help. I find that they are keen to support me if I show that I have an understanding of what I am doing and have obviously done my homework.

I think it is great that you have put work into creating a closed loop system even if it is through an unofficial channel. I think some nurses and consultants will appreciate the reasons why you have gone that route and some will be sticklers for "playing by the rules". I would sound out your nurse about the unofficial looping and your interest in a faster insulin and why you think it will help. Some teenagers rebel against their diabetes and neglect it, so I would hope they would be very supportive of someone who is trying to manage it better, even if it is through unofficial means.

Personally I don't find Fiasp significantly faster than NR but it is "gone" more quickly. What I do find is that I need lots more once my levels get above 10 because it is like it just turns to water at that magic number. My consultant felt that Lyumjev would not be any better and it is just how my body works with insulin and that is my suspicion too, so I decided not to try that and risk another potential 3 months of frustration trying to get the hang of a different insulin that might not give me a better result, when I am managing pretty well with Fiasp now.

Anyway, those are just my thoughts. Good luck. Go with evidence that shows why you want to change and be prepared to show them that you have spent time and effort researching it and want to try it. Ultimately, you may find that a change of insulin doesn't work for you or it isn't as straightforward a swap as you expect and throws up some other issues but you won't know till you try. I don't really think you have anything to lose. I don't think they can ban you from using an unofficial app as long as they have access to your CGM data.
 
I am not sure as my nurse suggested the change to Fiasp, NR was very very slow at breakfast, as with @rebrascora 90minutes or more at breakfast to kick in, and hypers it would take hours and hours.

I find Fiasp alot better for me personally, we also changed my basal which helped with breakfast massively, if I don't eat in 20 minutes in the morning it will drop very quickly.

Just go in with your reasons and be prepared for other options they may suggest. good luck
 
My body prefers Fiasp to NovoSluggish but it took some getting used to as it definitely has some quirks.
But I don't understand why DIY Closed Looping needs to be the justification (or even mentioned). I have a pump but it is not closed loopable today and others use Fiasp without a pump.
 
Use fiasp in pump having used novorapid previously, been using it maybe 3 years now. It was recommended by dsn & to be honest its far better than novo, it's slightly faster acting but profile isn't a long as novo which suits me just fine.
 
nonethewiser said:
Use fiasp in pump having used novorapid previously, been using it maybe 3 years now. It was recommended by dsn & to be honest its far better than novo, it's slightly faster acting but profile isn't a long as novo which suits me just fine.
Click to expand...
I must admit it feels like the shorter profile is better suited for a pump than for MDI. (For most people: if Novorapid is really slow for you I can imagine a faster insulin might be better.)
 
Bruce Stephens said:
I must admit it feels like the shorter profile is better suited for a pump than for MDI. (For most people: if Novorapid is really slow for you I can imagine a faster insulin might be better.)
Click to expand...
I used fiasp for MDI and found the improvement from novorapid much better.
 
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