WARNING IF TAKING FOXIGA/DAPIFLAGIFLOXIN

[donnellysdogs]

Most importantly is the fact you are both ok.. Or are at least recovering. My heart goes out to you both and so glad that you read my post @Michele01.

 

[Michele01]

Crikey!! You were certainly incredibly lucky.....

I would still report this on the MHRA website though, as its ok the consultant doing posters and warnings but the most important thing he should have done is to inform the MHRA himself. Quite often they GPs and Consultants don't quite simply have time inbetween patients and consultations etc to do so.

I would wholly recommend that you do it.

@Winnie53.. This was an EU concern about inhibitor drugs so may not have fed back to the US yet...(although it should have been).. Red tape etc...

Its not just foxriga involved...

@donnellysdogs don't worry the consultant IS reporting it x

 

[Alisonjane10]

Ladies and Gents

I was put on Foxiga 10mg one month ago. 10 days ago I started to feel like I had 'flu, general aches and pains and very very tired plus I was also severely dehydrated despite drinking 3L of water a day. On Monday I was seen by the after hours clinic who found 5+ ketones in my urine. Thankfully the emergency doctor was alarmed and insisted I was seen by the hospital to have my blood gases taken (initially they wanted to send me home). When the blood results came back I was taken straight to the High Dependency unit as I had severe ketone acidosis. So bad that they were worried another 24 hours and I wouldn't have made it.

This has been caused solely by Foxiga. As mentioned in another thread, a medical alert has been issued about this medication BUT doctors are not generally aware yet that you can have normal BM levels but behind that your body is shutting down.

So if you are taking this tablet or have recently been prescribed it PLEASE make sure you get some ketone sticks and test your urine daily. If ketones show get your blood taken. If you start suffering with extreme tiredness and/or dehydration, please do the same.

I now have to inject insulin in the short term and eat lots of carbohydrates to eliminate the ketones.

I've been shaken to the core by this and am still scared and suffering from shock and I would hate for this to happen to anybody else. xxx

You poor thing. What a frightening & hideous thing to have to go through. Thank goodness you're going to be ok. I wish you well hun. X

 

[Molly56]

Feeling worried and concerned about this drug having read the stories ....my partner already made numerous trips to the toilet before starting on this so the risks of dehydration are there...don't know if this has increased since starting on Forxiga but was woken at least three or four times during the night as he heaved himself out of bed to go to the bathroom..
He is having a blood test today to check kidney function and HbA1c and is seeing diabetic nurse for results on Tuesday....am secretly hoping that something shows up to say that he shouldn't be on this medication as I am really concerned about the potential risks and if he will notice the signs and do something about it....don't know what the alternatives are but hopefully something less risky...
If not then there will certainly be questions that I will be wanting to ask especially before we go away on holiday in October...it is one thing knowing that you have the NHS on your doorstep in case of any complications but quite another when you are in a foreign country for two weeks with no idea of the level of knowledge and care or hospital facilities....am already feeling that the holiday could be stressful......I know that my partner will not worry about it (that's the way he is) but I will....

 

[Fayefaye1429]

Hey Molly can you share these posts with him

 

[Michele01]

Feeling worried and concerned about this drug having read the stories ....my partner already made numerous trips to the toilet before starting on this so the risks of dehydration are there...don't know if this has increased since starting on Forxiga but was woken at least three or four times during the night as he heaved himself out of bed to go to the bathroom..
He is having a blood test today to check kidney function and HbA1c and is seeing diabetic nurse for results on Tuesday....am secretly hoping that something shows up to say that he shouldn't be on this medication as I am really concerned about the potential risks and if he will notice the signs and do something about it....don't know what the alternatives are but hopefully something less risky...
If not then there will certainly be questions that I will be wanting to ask especially before we go away on holiday in October...it is one thing knowing that you have the NHS on your doorstep in case of any complications but quite another when you are in a foreign country for two weeks with no idea of the level of knowledge and care or hospital facilities....am already feeling that the holiday could be stressful......I know that my partner will not worry about it (that's the way he is) but I will....

@Molly56 I meant to mention in my first post - I had my bloods checked two weeks ago (before I started to feel unwell and was "only" dehydrated) and my kidney function and all blood tests was fine. There are only specific tests that will pick up ketoacidosis but one that can be done at home is using the ketone sticks. All your partner would need to do is wee on a stick twice a day, and compare the colour to the chart on the side of the bottle. You should be aiming for a 0 reading but they let me home from hospital when mine was 2+, However, anything over that and it needs investigating. So it's a good way of keeping an eye on things to make sure they're not slipping. It would also give you peace of mind.

 

[furbydoggie]

@furbydoggie I am SO sorry to hear that this has happened to you also. I'm so glad that you're well now (assuming you are). You were very very very lucky that they didn't turn you away because your BG levels were normal because I don't think the medical alert had been issued then. You must have been seen by a very investigative doctor. Can I ask what your blood gases were? Mine were 7.0 on admittance and my ketones 5+ but my BM was 7 and 8 ish!!!! I'm now having to inject insulin in the short term and take one Metformin (building to two because I don't tolerate them well). What have you been put on please?

Thanks for the support Michele01, I really thought I was the only one that reacted so badly to the drug. My stats are very like yours, the blood gases were 7 and the keytones were huge though I can't remember the exact number but like you the BG was 6-8. My symptoms were slightly different than yours tho, I got heart palpitations and it was theses that sent me to the emergency room. The emergency staff in our local hospital had never heard of the drug so I doubt if they reported the connection between the drug and the DKA but I may be wrong. I will contact the DNS and ask them to report it if they have not done so already. Consultant thinks I was misdiagnosed as T2 and I am on insulin and metformin. My last HBA1c was 5.5 or thereabouts.

 

[furbydoggie]

I alerted people on forum with this drug alert from the EU investigating it....

It was sent out to GPs via pulsetoday emails as a news item.

I am so shocked to hear of the dreadful occurences that have been reported here and I so hope that you both will recover to full health. It really saddens me enormously to read what you have both been through.

It isn't just foxriga - there are other similar drugs that are also involved as well.

I can't find my original posting alert to forum members as a link...but it should really be sent out to all GPs and pharmacists as an official MHRA warning..

Please can I ask whether your GPs or yourselves have completed the MHRA side effect alert - this can be done online. It is vitally important this is done as it is the only way that the MHRA will get to hear and act upon this dangerous drug.....

Hi Donnellysdogs - I have only just now completed the MHRA side effect alert and its equivalent in the ROI. Thanks for the heads-up as I never knew about the reporting mechanism and I don't think the medical professionals have done so on my behalf but I could be wrong. It was a horrible scary few days....

 

[donnellysdogs]

Hi Donnellysdogs - I have only just now completed the MHRA side effect alert and its equivalent in the ROI. Thanks for the heads-up as I never knew about the reporting mechanism and I don't think the medical professionals have done so on my behalf but I could be wrong. It was a horrible scary few days....

Good... Things like this have have to be notified by either patient or GPs or Consultants otherwise drugs (even side effects from statins) will never be accurate.

Wishing you well... And so glad that you survived this awful experience and will recover. Shock and worry from this experience used to inform forum members has been a good outlet for information and warning. Thank you so much for tsking the time out to warn us.

Placing warnings as I did on the forum is not enough sometimes. Real experiences can be more relevant. Thank you. Also, do check that this has been written on your medical notes as an i tolerance and allergy with your GP as this (if you moved or saw a different GP) should be logged as an official allergy.

I am currently pursuing my hospital and GP to have clearly marked data on my records that I have intolerance to bread, pasta etc as well as aspartame because in hospital recently I had to tell them of my intolerances.. It wasn't on my file......

 

[Simply]

Just come off Forxiga after more than six months and I'm so pleased

 

[Molly56]

Just come off Forxiga after more than six months and I'm so pleased

@Simply ....if you don't mind me asking ....for what reason did you stop taking the forxiga...am assuming it was on the advice of your GP or diabetic nurse. Did they help you to lose weight at all and did they lower your bs levels.

 

[Simply]

Hi Molly56 ,
It did drop my readings but not enough and I've had a horrendous six months of near incontinence ,so although I don't relish going onto insulin + metformin and Glimepiride , I might get my life back .My doctor made the decision .

 

[Suntanning]

I am a type 1 on a insulin pump and have been taking invokana for 16 months. My sugar levels are way down, I use less insulin. My side effects are dry month and drinking more water. I also lost 20 Lbs, but I wasn't aware of serious side effects. Ketonosis happen once but I was able to flush it out, run my pump higher to correct this problem. I haven't heard of any Type 1 taking this product.

 

[PatsyB]

I have been on forxiga for many months and never been issued keytone testing strips ...... maybe need to review my medication then

 

[Simply]

PatsyB for the 6+ months I was on Forxiga I was never offered keytone strips either.

Can they simply be bought over the counter in a chemist?

 

[Molly56]

I am a type 1 on a insulin pump and have been taking invokana for 16 months. My sugar levels are way down, I use less insulin. My side effects are dry month and drinking more water. I also lost 20 Lbs, but I wasn't aware of serious side effects. Ketonosis happen once but I was able to flush it out, run my pump higher to correct this problem. I haven't heard of any Type 1 taking this product.

@Suntanning ...it specifically states on the information about Forxiga that it is not suitable for patients with Type 1...am guessing there must be some reason in the mechanism of how it works that makes it incompatible with that form of diabetes but don't know what it is......as it removes sugar by excreting it through the urine (in part to help lose weight) I assume that if you have low blood sugar anyway then it gives more potential for hypos and the dangerous complications that could result from this.

 

[Molly56]

I have been on forxiga for many months and never been issued keytone testing strips ...... maybe need to review my medication then

@PatsyB ...my partner has only recently been prescribed Forxiga and was issued ketone strips on prescription with the tablets...only problem is he doesn't remember when or why he should use them.
I also understand that Forxiga is subject to certain monitoring perhaps as a result of these complications being flagged up. It may be that this has happened since you were first prescribed these so is probably worth asking for a review and making sure your prescriber is aware of recent concerns ...I would guess ketone sticks are available to purchase but also that you were entitled to have them on prescription.
Personally I would prefer it if my partner was not on these tablets but that is not my decision ....all I can do is hope that he doesn't suffer the complications that others have and be ready to advise and act accordingly.

 

[Molly56]

Feeling a bit concerned....my partner saw diabetic nurse today and asked the question about how and when to use the ketostix as he couldn't remember when she had said to use them.....evidently (from what he told me...and he doesn't remember sometimes) she told him that he does not need to use them as all recent blood tests have come back ok...and that the tests he had done to date showed up as all clear for ketones..
...am in a dilemma now as he won't listen to what I say about them and will only go on what she has told him....unfortunately I was at work so couldn't attend appointment with him otherwise I would certainly have been questioning the advice she was giving on the basis of what I have learnt about risks with Forxiga..
....just don't know what I can or should do....

 

[Michele01]

@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]

@furbydoggie - the Registrar writing up my case notes called me today and asked if I had been following a low carb diet whilst using Forxiga. I said that no I hadn't and asked why she asked. She said that there was some evidence to suggest that a low carb diet in conjunction with Forxiga might bring on DKA. Obviously that isn't the case with me but I was wondering if it was with you? The only other case she could find in the UK was somebody with Prader Willi Syndrome and I think that was before you had DKA. Could you please chase up the medical professionals that you saw and ask them to complete the MHRA. I think it's critical that data is more widely available so people can make informed choices.