WARNING IF TAKING FOXIGA/DAPIFLAGIFLOXIN

[PatsyB]

Might have been prescribed them before these findings yes as been on them twice now and am actually thinking of coming off them because of the above posts and the risks which have been brought to my attention on this forum... I shall have to ask the Doctor if I can get in to see one .....

 

[Molly56]

@Molly56 the one test that showed something was going wrong for me was by dipping my urine with the ketone test strip. It sounds like you're worried about your partner so to give you peace of mind I would suggest buying some and if nothing else just getting him to test once a day. Don't forget that this is a relatively new drug and data is still be gathered which is why the Diabetic Nurse has been more casual than you would have liked.

The ketone sticks should be used NOT on waking (as everybody has ketones early in the morning) but testing should happen a few hours after food (maybe breakfast or lunch) and then again at the end of the day. You can buy these over the counter I think.

@Michele01 ...he already has ketone sticks that nurse prescribed when starting on Forxiga but the issue is here that he told me that she said he doesn't have to use them....he is more likely to take notice of what she says rather than what I say....hence I was hoping that she would tell him he needed to test daily...

Am also interested in your comments to @furbydoggie about the low carb issue....my partner has not made a conscious decision to follow a low carb diet but seems to be doing so by default....he has cut out potatoes and most bread and will also look at carb content of foods he purchases and reject those too high in carbs...am wondering if this now puts him at greater risk of dka based on what your consultant asked you.
Is there anywhere that I can get hold of the information that you mentioned ....it could be useful to show to his diabetic nurse so that the right advice can be given.

 

[Michele01]

@Michele01 ...he already has ketone sticks that nurse prescribed when starting on Forxiga but the issue is here that he told me that she said he doesn't have to use them....he is more likely to take notice of what she says rather than what I say....hence I was hoping that she would tell him he needed to test daily...

Am also interested in your comments to @furbydoggie about the low carb issue....my partner has not made a conscious decision to follow a low carb diet but seems to be doing so by default....he has cut out potatoes and most bread and will also look at carb content of foods he purchases and reject those too high in carbs...am wondering if this now puts him at greater risk of dka based on what your consultant asked you.
Is there anywhere that I can get hold of the information that you mentioned ....it could be useful to show to his diabetic nurse so that the right advice can be given.

@Molly56 I think maybe you need to speak to your husband's diabetic nurse about this because you're clearly worried. Please rest assured that for some people Forxiga works perfectly well. The data and information on Forxiga causing DKA is still in its infancy and therefore at the moment only available to medical personnel so I'm afraid I can't help point you in a direction regarding the low carb issue - this was literally just something that the registrar mentioned to me yesterday but I have no idea where she found that information - and as I said above, in my case, the low carb issue doesn't apply. If your husband starts to get symptoms of DKA you WILL know - I promise you. He will feel generally unwell. So if that starts to happen then get him to use the ketone sticks and if anything shows up then get straight to the doctor. Once diagnosed, treatment is very effective for DKA - especially if found early enough. The good thing is that you know to get him to test if he's under the weather.

 

[Liam1955]

I began taking Dapagliflozin in May this year and at my last out patient appointment at Diabetic Clinic my HBA1C dropped to 71 (from 78), my BMI 29 (from 30.1), and lost 1stone 5lbs in total, my blood sugars were within range. But..... I just could not cope with the 24 hour SWEATING and constant THIRST. And so, much to my GP dismay I STOPPED taking it 3 weeks ago and my blood sugars are slowly creeping back up.

 

[ButtterflyLady]

I began taking Dapagliflozin in May this year and at my last out patient appointment at Diabetic Clinic my HBA1C dropped to 71 (from 78), my BMI 29 (from 30.1), and lost 1stone 5lbs in total, my blood sugars were within range. But..... I just could not cope with the 24 hour SWEATING and constant THIRST. And so, much to my GP dismay I STOPPED taking it 3 weeks ago and my blood sugars are slowly creeping back up.

I see from your other posts you are on insulin. Just wondering what sort of regime are you on - eg just basal, mixed insulin, MDI?

 

[Liam1955]

Hello CatLadyNZ. I am on 40 Units of Humulin l Insulin daily (which I believe to be "background" insulin) also taking 4 x 500mg Metformin daily. My next Diabetic Clinic appointment at Hospital is 14th October and I think? I might be going onto Fast Acting Insulin.

 

[Liam1955]

Hello CatLadyNZ. I am on 40 Units of Humulin l Insulin (which I believe is "background" insulin) and I take 4 x 500mg Metformin daily. My next Hospital Diabetic appointment is 14th October and I believe I shall be put on fast acting Insulin.

 

[ButtterflyLady]

Hello CatLadyNZ. I am on 40 Units of Humulin l Insulin daily (which I believe to be "background" insulin) also taking 4 x 500mg Metformin daily. My next Diabetic Clinic appointment at Hospital is 14th October and I think? I might be going onto Fast Acting Insulin.

That may be a good idea, as from what people say, background/basal insulin seems to help with the fasting blood glucose but a bolus injection with each meal is intended to deal with post-eating spikes. There is more info about this here:
http://www.phlaunt.com/diabetes/15478720.php

I just thought I'd ask you about it since you said your blood sugars would be likely to increase without the dapagliflozin. Hopefully optimising your insulin regime will get your blood sugars down.

 

[Michele01]

I began taking Dapagliflozin in May this year and at my last out patient appointment at Diabetic Clinic my HBA1C dropped to 71 (from 78), my BMI 29 (from 30.1), and lost 1stone 5lbs in total, my blood sugars were within range. But..... I just could not cope with the 24 hour SWEATING and constant THIRST. And so, much to my GP dismay I STOPPED taking it 3 weeks ago and my blood sugars are slowly creeping back up.

@liam1955 did you test your ketone levels whilst on Dapaglifozin? That's the thing that's most important. My BS's were coming down and everything was looking good but the raging thirst is the first sign that something might have been going wrong (well itt was with me anyway). It would have been interesting to see whether your ketones were elevated because if so, you might have been heading down the same path as me.

I am now injecting Novomix 30 twice a day at a dose I decide dependent on what I eat) and taking 2 x Metformin a day. It's worked very well and brought my BS down. I'm hoping to come off the injections soon and just go back to some form of tablet at some point. Several weeks ago, I was put on a long acting insulin instead of the Novomix but I hated it because it was far more difficult to control and my BS shot through the roof. With the Novomix, I feel more in control so I'm back on that again now.

I'm desperately worried though about stopping the injections, even though I want to, and trying a new tablet (for obvious reasons)!

 

[Liam1955]

That may be a good idea, as from what people say, background/basal insulin seems to help with the fasting blood glucose but a bolus injection with each meal is intended to deal with post-eating spikes. There is more info about this here:
http://www.phlaunt.com/diabetes/15478720.php

I just thought I'd ask you about it since you said your blood sugars would be likely to increase without the dapagliflozin. Hopefully optimising your insulin regime will get your blood sugars down.

CatLadyNZ - Thank You for asking and for information you have given me. WE like to think that we know all their is about Diabetes = but we don't. I have had Diabetes (type 2) for 15 1/2 years and it was well controlled with diet and low dose of Metformin. But, I went through a bad period in my life 5yrs ago and I just gave up. (I cared for my Mother for 9 yrs who had Alzheimer's and she just died suddenly). Thank You - I may call upon you for more advice/information at a later date, if that is OK.

 

[Liam1955]

Hello Michele01, Answer is no, ketones was never mentioned, my GP just said: should I develop burning urine/genital thrush/severe backache = then STOP taking Dapagliflozin. (Never got any of those 3 things) I had NEVER suffered with "sweating" till I went onto Dapagliflozin - it was night & day, but worse about 15 minutes after eating, my clothes were stuck to my body as though a bucket of water had been thrown over me. I stopped going out socially. My GP gave me on prescription a roll on deodorant for my arm pits = that worked. The good things about taking Dapagliflozin was: my HBA1C came down to 71 (from 78), BMI to 29 (from 30.1) lost 1 stone 5lbs and kept my blood sugars within the normal range. All this in 4 months of taking the tablet. This last week have noticed a small increase in blood sugars and I have increased my background Insulin to 40 units (I also take 4 x 500mg Metformin daily) Thanks.

 

[Michele01]

Hello Michele01, Answer is no, ketones was never mentioned, my GP just said: should I develop burning urine/genital thrush/severe backache = then STOP taking Dapagliflozin. (Never got any of those 3 things) I had NEVER suffered with "sweating" till I went onto Dapagliflozin - it was night & day, but worse about 15 minutes after eating, my clothes were stuck to my body as though a bucket of water had been thrown over me. I stopped going out socially. My GP gave me on prescription a roll on deodorant for my arm pits = that worked. The good things about taking Dapagliflozin was: my HBA1C came down to 71 (from 78), BMI to 29 (from 30.1) lost 1 stone 5lbs and kept my blood sugars within the normal range. All this in 4 months of taking the tablet. This last week have noticed a small increase in blood sugars and I have increased my background Insulin to 40 units (I also take 4 x 500mg Metformin daily) Thanks.

@liam1955 well I never had any of the symptoms that your GP told you to look for and look what happened to me! I believe that a general alert has now been sent to all medical professionals so I'd hope that they'd check for keytones and prescribe keytone sticks in future.

 

[Molly56]

@liam1955 well I never had any of the symptoms that your GP told you to look for and look what happened to me! I believe that a general alert has now been sent to all medical professionals so I'd hope that they'd check for keytones and prescribe keytone sticks in future.

@Michele01 ....since posting on this thread my partner still doesn't see the need to test with ketone sticks....what is worrying is that according to him the diabetic nurse has told him that he doesn't need to use them....clearly the alert to medical professionals is not getting through...or if it is it is not being stressed strongly enough to patients.
We are going on holiday next month and the ketone sticks will be going with us despite anything he will say about not needing them...as will details of potential side effect of forxiga as discussed in this thread...I will be going prepared ....hopefully for a stress free holiday...

 

[Michele01]

@Michele01 ....since posting on this thread my partner still doesn't see the need to test with ketone sticks....what is worrying is that according to him the diabetic nurse has told him that he doesn't need to use them....clearly the alert to medical professionals is not getting through...or if it is it is not being stressed strongly enough to patients.
We are going on holiday next month and the ketone sticks will be going with us despite anything he will say about not needing them...as will details of potential side effect of forxiga as discussed in this thread...I will be going prepared ....hopefully for a stress free holiday...

@Molly56 Please download this and take it to your partner's GP or diabetic nurse. This was issued because of what happened to me (and I suspect others if they were reported). This was written in June 2015 - https://www.gov.uk/government/uploa...438800/Drug_Safety_Update_-_June_2015_pdf.pdf

 

[Feelinggrotty52]

I was on Forxiga for just 6 days and felt really ill, sick, dehydrated despite drinking lots, extremely tired and couldn't eat, my usual readings are around 6/7 but it soared up to 17.6 ! My machine flashed " ketones" and I stopped taking it there and then.

 

[Liam1955]

Feelinggrotty52. Have been on it now 5 months - had a break of 3 weeks at my decision and my GP "told me off", so re-took it. It's done some good in bringing down my HBA1C, my BMI, my blood sugars to within 'normal' range and I lost 1stone 5lbs in weight.

 

[Feelinggrotty52]

Well done with weight loss! I must admit I don't feel like trying it again but will take my GPs advice.

 

[Liam1955]

Hi Feelinggrotty52. Thanks for your comment. I ought to have said that everybody reacts differently to various medications. The only bad side effect I suffer is excessive sweating whilst taking Forxiga - which is why I stopped it for 3 weeks and my GP told me off and said I was to go back on it. I ought to have been a bit more sympathetic and I do Apologize. Do you take any other medicine for your Diabetes? Williams.

 

[Feelinggrotty52]

SR Metformin and Sitagliptan, no need to apologise I was just feeling pleased for you!

 

[Liam1955]

Hi. I have been on Sitagliptin - took it for 6 months and had no effect. I take the Forxiga with my evening meal around 5.30pm'ish daily. Also take 4 x 500mg Metformin and 40 Units of Humulin 1 Insulin every day. Have only been on the Insulin just over 1 year now - ( it made me put on the weight). How are your blood sugar readings? William.