Omnipod 5 + Libre 2+ ● Advice

[PattiEvans]

Ah... It occurs to me that their algorythm is written for Novorapid timings and the Fiasp, much quicker, timings might be the reason they are not wanting you to go on it.

 

[rebrascora]

Yes, I used to have to prebolus 75mins for breakfast with Novo(not so)Rapid and it is just far too long and sometimes I would get distracted and forget that I hadn't had breakfast and then end up hypo 2 hours later because I left the house with active insulin in my system.... this was the days before I got Libre and could watch my levels. Not so bad at other times of day, but breakfast was a real pain and was the main reason I changed to Fiasp.
Good for you experimenting with the FIasp this morning! I hope it works out better for your son. Sometimes the "rules" that clinicians apply don't always work for everyone and good diabetes management is all about experimenting and finding what works best for you as an individual. I find that I have to stack corrections to make Fiasp work for me sometimes, particularly when my levels get above 10 and Fiasp seems to turn to water, but this is a real "No No" according to DSNs. I just do what works well for me and my consultant is very happy with my results, so as far as I am concerned, what I do is working and they have no right to object to how I achieve that. If you can make the O5 work with Fiasp and show them that it has been working, then hopefully they will support you. Of course you still have the problem with connection failure but if you can manage well with Fiasp in manual then go for it.

 

[lozboz25]

Hello there.

I am sorry I did not see this thread earlier, but I hadn't been looking in the forum until now. I sympathise entirely! I was on Omnipod Dash with Libre 2 prior to the Omnipod 5 and initially I was delighted to be offered the chance of Hybrid Closed Loop with the Omnipod 5 and Libre 2+. Unfortunately, like yourselves I absolutely hated it. I did give it 6 months but the things that frustrated me were the seeming inability to correct highs or indeed to learn anything at all about my needs. I also found it hard to place the pod in a suitable place where the Libre would read the pod, which severely limited my ability to rotate sites. In addition I found the meagre information available on the PDM as regards the sensor readings utterly useless. I became more and more frustrated with it and finally, after 6 months (so they couldn't say I didn't give it a fair chance) I switched it to manual and reinstalled the Libre 2 software on my phone. This enabled me to place the pod wherever I liked and have all the information I was used to from the sensor. However.... it was still limiting because the lowest I could set the target was 6.1mmol rather than the 5.5 mmol I was used to. Sounds minor, but indeed it made the difference to me being constantly in the 7s rather than the 5s I was used to. When I told the DSN what I had done she commented that I was not the first to turn off the algorhythm and revert to manual.

I concluded that the software had been written in a hurry, by someone who did not have a comprehensive understanding of the requirements of a diabetic person. One thing that I find very odd regarding corrections is that it takes into consideration the amount of basal which is scheduled for that hour. Whereas IMHO that is quite separate and shouldn't be counted into IOB.

I requested to revert to the Dash, but was told that because I had (at the DSN's request) handed the Dash PDM back I couldn't go back onto the Dash. However she offered me the Ypsopump (which is a tubed pump) with CamApps software and Libre 3 but warned I couldn't change again for 4 years. I've had a tubed pump before for 8 years so I know the score and actually think I prefer it to the Omnipod. I have not started on it yet. I am having the training on 1 May.

One thing she told me was that I would have to change insulins, but I had done my research and I don't. I use Apidra which is licenced for the Ypsopump so I am fine. I have in the past (pre-pumping) used both Novorapid and Humalog and prefer Apidra by a mile. It may not be quite as fast as Fiasp, but I have no experience of that. When I first went onto pumping 13 years ago the DSN at the time had everyone on Apidra. I had a lot of respect for that DSN. The current one and I do not always see eye to eye, but I am careful not to let her know that. Anyway, I digress, in fact I once had to use Novorapid when I couldn't source Apidra and I was shocked at how slow it was. It may be worth your boy trying Apidra.

I really do sympathise and hope my post helps a bit... please feel free to ask if I haven't made things plain.

6 Months! Wow! We are only on day 4 and we absolutely hate it. I know we have to give it time to work but right off the bat we haven't liked it. And to me time is valuable, he has been high the past 4 days since been on it and I just think what damage it is causing him and how it is making me feel. If I could prevent it then I will absolutely do that, and not just sit and wait around.
Wl
We are constantly loosing signal for his bloods glucose. We never had this problem with the libre 3. And like you said we are limited as to where we can place the libre2+ and the omnipod 5 which I don't like in itself. I don't like how big the libre 2+ is. I couldnt fault the libre 3. We shouldn't loose signal like we have done. I spoke to omnipod about loosing signal and they told me to just restart the PDM or rescan the sensors but I shouldn't have to do that as we are loosing the signal constantly even when he has the PDM on him in his pocket ornat the side of him. I don't know how much closer everything has to be for it to all work correctly.

I have found that the omnipod 5 is limiting all his corrections and his carb ratio which I don't like.

I luckily haven't handed back the DASH, and I did check with his nurse that if we don't like it could we go back on to the Dash and she said yes. So I hope she doesn't go back on her word. I know we haven't given it a long enough shot, but I really do not like it, specially when before we was comfortable and his bloods was fine. There really was no reason for us to change other than them hyping it up to my son and my son wanting to give it a go.
I have put the PDM in to manual mode today to see if thay is any better but I know this mode is just like the Dash.

We wasn't given any other choice of insulin, we just got told he needs to go back on to novorapid which I told them I didn't want. I am not sure what other insulin is insured to go into the omnipod 5 so I might request if we can change on to thay insulin before we totally decide we don't want to be on the omnipod 5.

Thank you for getting back to me, you message has really helped. Xx

 

[lozboz25]

Ah... It occurs to me that their algorythm is written for Novorapid timings and the Fiasp, much quicker, timings might be the reason they are not wanting you to go on it.

Ah ok. Novorapid doesn't work for my son.
This morning he waited 45 mins before eating after his insulin and his bloods didn't even shift, whereas with fisap they work within 15mins. It's a huge difference and with having a hungry boy and making him wait nearly an hour for any impact it's a big ask.

 

[lozboz25]

Yes, I used to have to prebolus 75mins for breakfast with Novo(not so)Rapid and it is just far too long and sometimes I would get distracted and forget that I hadn't had breakfast and then end up hypo 2 hours later because I left the house with active insulin in my system.... this was the days before I got Libre and could watch my levels. Not so bad at other times of day, but breakfast was a real pain and was the main reason I changed to Fiasp.
Good for you experimenting with the FIasp this morning! I hope it works out better for your son. Sometimes the "rules" that clinicians apply don't always work for everyone and good diabetes management is all about experimenting and finding what works best for you as an individual. I find that I have to stack corrections to make Fiasp work for me sometimes, particularly when my levels get above 10 and Fiasp seems to turn to water, but this is a real "No No" according to DSNs. I just do what works well for me and my consultant is very happy with my results, so as far as I am concerned, what I do is working and they have no right to object to how I achieve that. If you can make the O5 work with Fiasp and show them that it has been working, then hopefully they will support you. Of course you still have the problem with connection failure but if you can manage well with Fiasp in manual then go for it.

75 mins is a very long time. It shouldn't be that long. My little boy finds it hard to wait the 15mins for the fiasp to kick in never mind an hour. When he was last on novorapod I did an experiment to see how long it took the insulin to "kick in" and how long it took to "peak" and it took about 45 - 60 mins to kick in and didn't peak until an hour and half later. It's too delayed. We have had much better results with fiasp with how fast it works for him. It only takes 15mins for it to kick in and half an hour to peak. It's a massive difference.
The connection to the libre 2+ is a problem and it shouldn't happen as often as it is. X

 

[nonethewiser]

We wasn't given any other choice of insulin, we just got told he needs to go back on to novorapid which I told them I didn't want. I am not sure what other insulin is insured to go into the omnipod 5 so I might request if we can change on to thay insulin before we totally decide we don't want to be on the omnipod 5.

You keep mentioning insurance/insured, are you outside of UK, possibly USA?

Just keep in mind that if your lad does change back to Dash then you'll need to request pods to go with it, as O5 pods won't work with Dash & vice versa.

Good luck.

 

[lozboz25]

You keep mentioning insurance/insured, are you outside of UK, possibly USA?

Just keep in mind that if your lad does change back to Dash then you'll need to request pods to go with it, as O5 pods won't work with Dash & vice versa.

Good luck.

No we are in the UK. We are NHS funded, so it must be the insurance to do with that?

 

[PattiEvans]

My clinic do not insure my Omnipod, I have to insure it on the household insurance and it's only the PDM. I do not think it is "Licenced" for use with Fiasp - which means merely that the two have not been extensively tested together. See https://www.omnipod.com/en-gb/safety Usually this means that the company do not feel it is worth the financial outlay to do the testing as not that many people use Fiasp in their experience. It doesn't mean it won't work, but your DSN may not want to chance it as it may prejudice her job. Since you are unconvinced by the efficiency of the system (as am I) then I suggest you keep on asking to go back on the Dash.

FWIW I only persisted with the Hybrid Closed Loop system for 6 months because I was getting 85% time in range. Even though I was higher on the range that I am normally used to.

 

[everydayupsanddowns]

I’m pretty sure it wouldn’t be the Dexcom G5 that he’d be offered @lozboz25

That’s a few versions ago, and I’m pretty sure they don’t make them any more?

Dex G7 is a similar size to the Libre3 I think, and has the same integrated transmitter arrangement. Dex G6 (which I used for 4 years and generally had great fingerstick-similarity) has a separate transmitter and is larger.

 

[lozboz25]

My clinic do not insure my Omnipod, I have to insure it on the household insurance and it's only the PDM. I do not think it is "Licenced" for use with Fiasp - which means merely that the two have not been extensively tested together. See https://www.omnipod.com/en-gb/safety Usually this means that the company do not feel it is worth the financial outlay to do the testing as not that many people use Fiasp in their experience. It doesn't mean it won't work, but your DSN may not want to chance it as it may prejudice her job. Since you are unconvinced by the efficiency of the system (as am I) then I suggest you keep on asking to go back on the Dash.

FWIW I only persisted with the Hybrid Closed Loop system for 6 months because I was getting 85% time in range. Even though I was higher on the range that I am normally used to.

Ah OK. Thank you for the information.
Yesterday I changed his pod, and put fiasp in the pod and we have had much much better results. He has spent more time in range and has been much more steady. He didn't even spike this morning for breakfast, which before on novo rapid he spiked up to 20mmol and that's with a prebolus of 45mins and I over counted the carbs to try stop the spike. Fiasp definitely works better for him, he only waited 15 mins for the prebolus on fiasp which is a massive difference.
I'm going to let him nurses knows that I have changed his insulin even though I am not allowed as I'm not having him sitting at 16mmol or higher (which he was for 3 days) when I know novorapid doesn't work for him and fiasp does. Plus I put the PDM back on manual for breakfast too so I could control is insulin.
I think at the moment, the insulin we was using was the problem as it wasn't working for him. Whereas now I have put fiasp in to the pod, we are having constant blood glucose readings as we arent having sudden high spikes or fast spikes, and corrections that are given are working faster. Yesterday was a better day.
Thank you for all your help! X

 

[lozboz25]

I’m pretty sure it wouldn’t be the Dexcom G5 that he’d be offered @lozboz25

That’s a few versions ago, and I’m pretty sure they don’t make them any more?

Dex G7 is a similar size to the Libre3 I think, and has the same integrated transmitter arrangement. Dex G6 (which I used for 4 years and generally had great fingerstick-similarity) has a separate transmitter and is larger.

Ah OK, thank you for letting me know.
I'm not up to date with dexcom as we haven't used it in a good few years. We was happy with the libre 3.

 

[nonethewiser]

No we are in the UK. We are NHS funded, so it must be the insurance to do with that?

OK, rightly or wrongly I've never bothered with pump insurance. Anyway pleased your boy has seen better results using fiasp.

 

[trophywench]

Well - insure it yourself or not - cos I know for an absolute fact that the NHS doesn't insure any pump, once it is handed over to the patient. What it means in practise is that should the pump fail because you drop it or eg accidentally drop it in the washing machine cos 'somebody' left it in their trouser pocket and the trousers got washed (though most unlikely with a child you'd ever bung their clothes in the washer without checking every possible nook and cranny for used tissues and bits of Lego etc etc) then you have to pay for its replacement. With the pump I used to have, the value was stated to be £3,000 so I had to specify it on our policy as 'A valuable worth in excess of £1,000'. My latest pump, the stated value is £2,000 so when I remember, I'll change it, except I'll wait until renewal cos if you change anything mid term they make a charge, but not at renewal. (Bats when its less!)

So can you suddenly find the money to replace the pump? - if so fine, if not .........

 

[rebrascora]

So can you suddenly find the money to replace the pump? - if so fine, if not .........

Patch pumps are disposable so no need to insure I would think but I image the PDM has a value although I would expect it to be less that £2000 and probably nearer the price of a phone.

 

[PhoebeC]

Hi @lozboz25 I started on the Omnipod 5 and libre 2 + in December, on Fiasp too. Was on the dash and libre 2, also Fiasp, which I have been on since pens. I have always liked the libre all versions. And the dash and me did very well. Also Fiasp is good for me.

When I first started I had a nightmare with connections as you describe here, I was also told by Insulet to only use my arms, or to wear the libre in other locations (which freestyle do not advise) anyway, I can't use my arms only as that's not enough rotation for me, and DSN said it defected the point of a patch pump, and to try and rotate as advised. I was having so many manual days due to the connectivity just not working that like your son I hated it, was finger testing. I was in tears on Christmas day, as I kept having to test my fingers, I am so used to CGM after 5 years that back all these steps on a day I just wanted to enjoy took it out of me.

We did work out that you can use the phone app with the libre 2 + also, if you set up with the PDM first, that way the alerts would work on the phone if not the PDM.

My DSN asked the consultant if I could be moved over to the G6, the connection works great and I like the G6, the different sites, not just arms, the apps.

Its been 2 months since I started on the G6, so if I think about HCL starting from then I am only a few months in. Its good days are as good as mine where on the dash, I have 1-2 much better days a month on this HCL and then its worse days are much worse than I ever got on Omnipod Dash so its mixed, my average TIR for 30 days is 62% which was about the same as I would get on the Dash. I will give it 6 months, compare data, my blood results and impact on my life and then decide. I will say my nighttime levels are great, but it doesn't get my menstrual cycle, or my exercise, without the modes on Dash, I play rugby 2/3 days a week, so when I add up the days it is good at vs not, its a few days a month it is optimal.

If it helps 4/6 people who started on the O5 on the same day also used Fiasp, even if not "approved" my diabetes team is letting people use it.

 

[PhoebeC]

Also I want to add, I felt I was sold the wonder pump. Heard a lot of positive things about it, and about HCL in general. From pens to the Dash I felt better instantly, it was great from the outset, changed my quality of life. I at least thought it would stay the same, but it actually got worse which sounds the same for your son. I am sorry this happened to him to. Those first months I could have swapped back at anytime, and actually I was in manual mode so often that I was pretty much back in manual.

Good luck. I hope it behaves for you. I would ask about the G6 or whatever other sensors work with it.