SGLT2i drugs and EDKA - how much to worry?

[debs248]

On another thread I discovered something alarming which I had never heard of before.

Background: 2 months ago I was diagnosed with diabetes with an HbA1c of 113. I was prescribed Gliclazide as a rescue remedy only (stopped about 3 weeks ago) and Metformin building up to 2000mg per day, which I'm still taking.

Presumably because of the Gliclazide I was fortunate to be given a BG meter (dual use but no ketone strips supplied). After a difficult few days I can now get a blood drop at least one time in three, after 10-15 minutes vigorous preparation (yes, it's exhausting).

Since stopping the Gliclazide I'm typically seeing FBG readings of 10-12, dropping eventually to 7-9 by late evening. While this is an improvement on the 15s I was getting at the beginning, it still feels high to me. Next bloods inc. HbA1c due to be taken on 15th July.

I've been told by a GP that once my HbA1c drops below 70, the diabetes team will want to put me on a 'flozin, I don't know which one. I asked about going back on Gliclazide as it was working for me but she said "we don't like to prescribe it any more as it's an "old drug"."

I'm not keen as I'm perimenopausal, have an overactive bladder as it is and Severe ME so won't cope with needing a wee every half hour as some people have reported. Also not keen on getting thrush, though I understand not everyone does.

These concerns pale into mere inconvenience when I learn that not only does the risk of DKA rise on SGLT2is, but it's a form called EDKA where I won't even get the warning sign of high BG. This link https://drc.bmj.com/content/11/5/e003666 says it can happen with BG below 200 in US units which I calculate as 11.1. As I get that high several days a week I am alarmed to say the least. Am I overreacting or should I be worried?

 

[Leadinglights]

I am puzzled by the logic of adding that medication when your HbA1C is already dropping anyway and by the comment that gliclazide is an 'old' drug. From what I have seen it is still widely prescribed.
Taking finger prick tests shouldn't be difficult and usually only takes seconds. Improving your technique would help, there are some YouTube videos which may help you see if there is anything you could do better.

 

[debs248]

Taking finger prick tests shouldn't be difficult and usually only takes seconds. Improving your technique would help, there are some YouTube videos which may help you see if there is anything you could do better.

Believe me there is no piece of advice I have not already tried, from keeping hydrated, warming hands, various ways to shake/ squeeze/ dangle hands.

As I have extremely deep and elusive arm veins, my GP reckons I probably have very deep capillaries too and am just unlucky.

 

[Lisa65]

I flatly refused to go on a flozin for the same reasons that you are concerned about. Plus there's an rare but extremely serious condition called Fournier's gangrene (if you are at all squeamish do NOT look this up) and there seems to be an increased risk of this in people taking SGLT2.
It just seems like every time a new diabetes drug comes out, there's a mad rush to get everyone onto them.

 

[debs248]

I flatly refused to go on a flozin for the same reasons that you are concerned about. Plus there's an rare but extremely serious condition called Fournier's gangrene (if you are at all squeamish do NOT look this up) and there seems to be an increased risk of this in people taking SGLT2.
It just seems like every time a new diabetes drug comes out, there's a mad rush to get everyone onto them.

I've heard about the gangrene but for some reason it doesn't scare me so much. It's become obvious from your post and other reading that this is not the ideal drug for me and I shall push for Gliclazide instead.

 

[silver minion]

I was given a choice of increased gliclazide dose or dapagliflozin earlier this year after my HbA1c went up a bit after Christmas/New Year overindulgence.
With a long history of UTIs and thrush pre-diagnosis I declined the flozin, also I already pee quite frequently as well and didn't want to go even more often. (Bladder the size of a thimble...at least it feels that way 😱 )
Explained all this plus the fact I am tolerating gliclazide well and have good hypo awareness. No change to medication at latest review recently.
Long term if I can keep HbA1c below 48 I would like to reduce medication.
Advocate for yourself stating your perfectly valid reasons. Good luck @debs248

 

[Wendal]

On another thread I discovered something alarming which I had never heard of before.

Background: 2 months ago I was diagnosed with diabetes with an HbA1c of 113. I was prescribed Gliclazide as a rescue remedy only (stopped about 3 weeks ago) and Metformin building up to 2000mg per day, which I'm still taking.

Presumably because of the Gliclazide I was fortunate to be given a BG meter (dual use but no ketone strips supplied). After a difficult few days I can now get a blood drop at least one time in three, after 10-15 minutes vigorous preparation (yes, it's exhausting).

Since stopping the Gliclazide I'm typically seeing FBG readings of 10-12, dropping eventually to 7-9 by late evening. While this is an improvement on the 15s I was getting at the beginning, it still feels high to me. Next bloods inc. HbA1c due to be taken on 15th July.

I've been told by a GP that once my HbA1c drops below 70, the diabetes team will want to put me on a 'flozin, I don't know which one. I asked about going back on Gliclazide as it was working for me but she said "we don't like to prescribe it any more as it's an "old drug"."

I'm not keen as I'm perimenopausal, have an overactive bladder as it is and Severe ME so won't cope with needing a wee every half hour as some people have reported. Also not keen on getting thrush, though I understand not everyone does.

These concerns pale into mere inconvenience when I learn that not only does the risk of DKA rise on SGLT2is, but it's a form called EDKA where I won't even get the warning sign of high BG. This link https://drc.bmj.com/content/11/5/e003666 says it can happen with BG below 200 in US units which I calculate as 11.1. As I get that high several days a week I am alarmed to say the least. Am I overreacting or should I be worried?

Hi Debs.I would ask any questions to your medical team and raise any concerns with them about any recommended medication.None of us here can give specific medical advice and individual drugs will be appropriate for specific individual circumstances and people and can be varied based on experience.
I really would not worry about the EDKA aspect as it is a specific form of DKA called Euglycemic DKA as basically it is DKA but without high BG readings but is treated in the same way.It is basically mentioned to make people aware that it exists so it is not completely dismissed from a diagnostic perspective.
Good luck

 

[Docb]

Hi @debs248 - What do you take as your FBG which I assume is a fasting blood glucose?

 

[everydayupsanddowns]

Hope the discussions about the most suitable medication go well with your Dr/nurse @debs248

Sorry to hear about the trouble you have getting a fingerprick sample - that sounds like a real faff. Have folks here recommended the Roche / Accuchek Multiclix to you in the past.

Those have a drum of lancets so that a fresh one is always on hand, with good depth variation if you need a deeper stab, and robust build quality. May be worth trying if you aren’t already using one?

 

[debs248]

Hi @debs248 - What do you take as your FBG which I assume is a fasting blood glucose?

First reading of the day. As I can't test in bed it's after a couple of loo trips and sometimes a wash too. I only drink unsweetened, lightly milked tea until after I've tested.

 

[debs248]

Hope the discussions about the most suitable medication go well with your Dr/nurse @debs248

Thanks. I hope I won't need to fight but I don't trust any HCP I haven't dealt with before to be interested in my needs/ views.

Sorry to hear about the trouble you have getting a fingerprick sample - that sounds like a real faff. Have folks here recommended the Roche / Accuchek Multiclix to you in the past.

Those have a drum of lancets so that a fresh one is always on hand, with good depth variation if you need a deeper stab, and robust build quality. May be worth trying if you aren’t already using one?

To paraphrase the Monty Python Stringette sketch, owing to a clerical error I have 204 Multiclix lancets but no device to go with them.

My current lancing device appears to work adequately, and while I was waiting for the surgery to prescribe the right lancets, I borrowed a Bayer device and lancets that had belonged to my husband's late grandmother, with a similar (lack of) success. I think it's just me, so am reluctant to spend even £15 on something that's unlikely to make much difference, as money is quite tight. Should the surgery stop prescribing lancets (they're already rationing them) then I'll get a Fastclix or whatever it's called!

 

[Docb]

First reading of the day. As I can't test in bed it's after a couple of loo trips and sometimes a wash too. I only drink unsweetened, lightly milked tea until after I've tested.

OK. My data (taken immediately I get out of bed) would give me an HbA1c of around 70- 80 for waking readings of 10-12. I always say that my data is good for me and may not apply to everybody but it may be that with those waking readings your next HbA1c will be down from your high of 113 although maybe still above the diagnosis limit. Anything heading in the right direction has got to be a good thing.

As for flozins....I take one and it works. Brought my BG down a bit and absolutely no side effects. The medics these days seem to prefer flozins over gliclazide for some reason or another and I am happy to leave it to them to come to the best decision. As for the potential for the very low probability side effects, I really don't worry about them. I drive about in a car - far riskier proposition of doing myself some damage than taking a pill that has been scrutinised up hill and down dale by all and sundry.

 

[debs248]

As for flozins....I take one and it works. Brought my BG down a bit and absolutely no side effects. The medics these days seem to prefer flozins over gliclazide for some reason or another and I am happy to leave it to them to come to the best decision. As for the potential for the very low probability side effects, I really don't worry about them. I drive about in a car - far riskier proposition of doing myself some damage than taking a pill that has been scrutinised up hill and down dale by all and sundry.

Thank you. Reassuring to hear some people tolerate 'flozins well, as obviously forum posts are usually by people having problems. Depending on how the review goes, and what my HbA1c actually turns out to be, I may agree to take it with the proviso that if I do have side effects I stop immediately and request an alternative.

If I hadn't already both tolerated Gliclazide and seen it successfully bring/ keep down BG I wouldn't be quite so reluctant to try an unknown (to me) drug with non-trivial side effects.

The link to EDKA suggests to me that despite presumably thorough testing before launch, doctors were surprised that there were so many cases once people started taking flozins "for real" and my GP surgery may not know about this risk. Any form of DKA scares me as it requires admission to hospital.