SGLT2 inhibitors: updated advice on the risk of diabetic ketoacidosis

Michele01

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I am one of the first people who ended up hours away from death with severe DKA and posted about this to warn others. Unfortunately a year later I was diagnosed with the most aggressive form of breast cancer. Luckily it was found very quickly but I would urge everybody who has taken Forxiga of any of the similar drugs to have regular mammograms. I cannot honestly say that this was caused by the drugs but there is no family history of breast cancer and my genes were tested and were negative. Although there was some suggestion in early trials that linked it to cancer there was never any concrete evidence. My specialist agreed to flag up my breast cancer and hopefully if anybody else has been in a similar position their consultants have fond the same thing.
 

Michele01

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114
Type of diabetes
Type 1
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Tablets (oral)
Here is a link to the DCUK webpage giving info about these drugs, including the common brand names.
(it occurred to me that people may not realise that the drug they are taking is an SGLT2 inhibitor [Gliflozins])

https://www.diabetes.co.uk/diabetes-medication/sglt2-inhibitors.html

Also worth noticing that as I post this, the side effects listed on that page do not include ketoacidosis, although they list genital and UT infections, hypos, liver damage, breast and bladder cancers and increased cholesterol.

Maybe @Administrator may ask someone on the team to update the info to include ketoacidosis? Thank you in advance, Administrator. :)

@Brunneria cohld you please link me to where there is a link to breast cancer and Forxiga please? I was one of the first in the UK to take Forxiga and have severe DKA. A year later I developed breast cancer.
 

kokhongw

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A Review on the Relationship between SGLT2 Inhibitors and Cancer
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4164126/

Risk of increasing breast and bladder cancer remains a safety issue of SGLT2 (sodium glucose cotransporter type 2) inhibitors, a novel class of antidiabetic agent. We reviewed related papers published before January 29, 2014, through Pubmed search. Dapagliflozin and canagliflozin are the first two approved SGLT2 inhibitors for diabetes therapy. Although preclinical animal toxicology did not suggest a cancer risk of dapagliflozin and overall tumor did not increase, excess numbers of female breast cancer and male bladder cancer were noted in preclinical trials (without statistical significance). This concern of cancer risk hindered its approval by the US FDA in January, 2012. New clinical data suggested that the imbalance of bladder and breast cancer might be due to early diagnosis rather than a real increase of cancer incidence. No increased risk of overall bladder or breast cancer was noted for canagliflozin. Therefore, the imbalance observed with dapagliflozin treatment should not be considered as a class effect of SGLT2 inhibitors and the relationship with cancer for each specific SGLT2 inhibitor should be examined individually. Relationship between SGLT2 inhibition and cancer formation is still inconclusive and studies with larger sample size, longer exposure duration, and different ethnicities are warranted.
 

ickihun

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I don't care how many times people reintroduce this data. Docs (5 of mine for example) are still heavily pushing this drug

If I had not had a documented adverse reaction to one of them, I probably would have been declared non compliant as a patient by docs without a clue who wanted me to get better control:

https://www.fda.gov/Drugs/DrugSafety/ucm617360.htm

I am sure I am not the only person not to realize that a whole class of diabetic drugs is downright dangerous

The connection between this kind of gangrene and the common women's curse candida also needs reiteration
Yes.
Candida was my biggest side affect on Canagliflozin but only started having mobility problems after taking this med too. Hem!!!
 

carina62

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I have on several occasions asked forum posters who are using this family of diabetes medication if their prescriber has discussed the symptoms of DKA with them in regard to this family of medications. So far none has replied that this happened, so I am starting this thread with the current Government advisory from both the UK and USA. I cannot find any NICE guidelines to GP's covering this aspect but there was an internal assessment report I found that discusses this topic. The report is not for public release. It discusses the reported incidence rates for DKA and acute pancreatis but has no recommendations other than wait for more FDA investigation studies to complete.
The following advisories are released and updated by the regulatory authorities:
https://www.gov.uk/drug-safety-upda...d-advice-on-the-risk-of-diabetic-ketoacidosis


http://www.fda.gov/Drugs/DrugSafety/ucm446845.htm

I really think this should be made into a sticky so it does not get lost. DKA is a potentially life threatening condition that can apparently be triggered by these meds even on lowish bgl levels (10 mmol/l) so is not the same as the classic DKA symptoms where there is very high bgl with it.
@Giverny

The report that the NICE comittee used to base their decision on is available on the web
https://www.nice.org.uk/guidance/ta336/chapter/4-Consideration-of-the-evidence

It is interesting that the Company ran all the tests and presented the findings. The tests were short duration and the only side effect noted in the summary was UTI. The incidence of bone thickening and fracture was not reported, and DKA was not considered. There was no seperate chapter on SAFETY at all, and long term safety did not seem to be a consideration.

The current guidelines for prescription do not mention either of these 'side effects either.
https://www.nice.org.uk/guidance/ta390/chapter/3-Evidence


Edit to add a couple of related topics:
Sglt2 Inhibitors Continue To Be Linked With Amputation Risk In Type 2 Diabetes
https://jamanetwork.com/journals/jamainternalmedicine/article-abstract/2696726

And another related study on mortality associated with this medication:

https://jamanetwork.com/journals/ja...t=personalizedcontent&previousarticle=2696726

This is scary reading! I think I’ve made up my mind and am going to refuse this drug and try and continue to lower my levels with diet & exercise.
 

ickihun

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This is scary reading! I think I’ve made up my mind and am going to refuse this drug and try and continue to lower my levels with diet & exercise.
Its good for seeing 7s instead of 10s but no walk in the park with it's side affects.
I cannot prove it but my walking has never been the same since I tried canagliflozin. Co-incidence?
I've never had a walking problem and I've been heavier than I am now so something has changed. No menopause yet so no bone density change from that. I wanted to get mine checked but nothing to compare it too as no previous scans. My pelvis and spine meeting joint/disc is effected and weight loss surgery hoping to relieve the pressure of nip. Bones and muscles play a part too but nhs helping to put it right, indirectly.
We all know our own bodies best.
Tablet changed my skeletal dynamics. And I cannot get it back. :(
 

Indy51

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And apparently the class action suits in the USA are starting. Just saw this posted on Twitter:

invokan.PNG
 

ickihun

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I don't mind being the alarmist on this occasion. Its so damaging to diabetics who rely on their mobility to maintain their diabetes. Mobility is a huge part of maintenance.
I feel like a fish with one fin :(
I'm back on Dapagliflozin (rather than canagliflozin) for only a few weeks due to bariatric surgery cannot commence without 3kg loss.
I'm heavily monitoring and fully aware of the DKA possibility. I'm desperate to lose weight so much so I've even started the 800cals diet as the same time.
Trush treatment ordered due to feelings which I've treated with canasten wash twice.
Only for a few weeks. None allowed through op period.
I've reduced my insulin by a eighth as instructed.
Still no metformin tolerable.
Needs must.
I'm disabled anyway so......
 
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ickihun

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And apparently the class action suits in the USA are starting. Just saw this posted on Twitter:

View attachment 28559
The genital gangrene can be from symptoms similiar to thrush. That's why those with thrush should be checked over before assuming thrush.
However it has to be symptoms with no treatment, then tested (swob) in lab. A very very painful time, if you can endure it long enough to be tested.
 

ringi

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@ickihun if you can, get a blood ketones meter so that you can control for the risk of DKA, and remember that dehydration increase the risk, so drink a lot of water.
 
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DaveXF

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So..after reading this ( genital gangrene, *****) , I won't be taking up the kind offer from my DN to have this muck inside me
Now..let's have a look at sitagliptin :)

Edited by mod for language
 
Last edited by a moderator:

DaveXF

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Messages
96
So..after reading this ( genital gangrene, *****) , I won't be taking up the kind offer from my DN to have this muck inside me
Now..let's have a look at sitagliptin :)

Edited by mod for language
Apologies.
I only used the first name of a man who's birth we may be celebrating in about a week and a bit.
 

magicmoose2

Newbie
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3
Just posted this on the thread "Dapaglifloxin - anyone had any experience with this?" but figured I would cross post it here as well.

Hello, magicmoose here - for some reason I am unable to log in with my real account so have created magicmoose2 until I can rectify the issue with the forum team.

An update on my experiences with Dapagliflozin! Commenced on 29/12/18 and reduced carb intake on 02/01/19 gradually saw numbers come tumbling down in the right direction. Started to feel unwell light headed / headache a week in so as advised here got my blood pressure checked and was deemed ok. Also purchased a BP monitor to check at home and BP was perfect, not too low or too high.

Headache passed, but then I started to feel ill - I'm not normally physically ill so I knew something was not right. Four days in after abdominal pain, lower back ache, cramps in legs, headache and general feeling of confusion I checked for ketones with a ketone stick, was at ++++ next day checked again when up and same ++++ BP fine and BG in 10's.

Decided to speak to duty DN who initially thought I had a virus and advised me to stop Dapagliflozin, if symptoms continued then it was a virus, if they disappeared then blame the drug. I then mentioned the ketones and she asked me to check again and she would call back. I checked still at ++++ and so given my symptoms she sent me to A&E. I fear had I not mentioned the ketones she would have just gone with the virus idea.

Triaged in A&E blood ketones at 3.6 of course doctors were confused as BG's fairly normal, at this point reading on BG monitor was 9.2. That morning I was struggling to eat, felt sick and was nodding off in the chair - not like me. I was also incredibly thirsty and was drinking loads of water, mouth was extremely dry. When I mentioned the drug and the connection to DKA the doctor did his research and started to treat me for that. Fluids administered, bloods taken, chest x-ray (breathing was a little fast) ECG done. Spent 5 hours in A&E before being moved to ward. Spent three hours on the ward and stayed for two nights until bloods improved.

Ketones continued to increase over the next few hours, but eventually started to go down. Back home, all symptoms gone within 24 hours, Dapagliflozin stopped. No ketones showing now on stick.

I'll be honest had I not used this forum to learn of DKA with Dapagliflozin, I might have dismissed it as a virus given the time of year.
 

Oldvatr

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Just posted this on the thread "Dapaglifloxin - anyone had any experience with this?" but figured I would cross post it here as well.

Hello, magicmoose here - for some reason I am unable to log in with my real account so have created magicmoose2 until I can rectify the issue with the forum team.

An update on my experiences with Dapagliflozin! Commenced on 29/12/18 and reduced carb intake on 02/01/19 gradually saw numbers come tumbling down in the right direction. Started to feel unwell light headed / headache a week in so as advised here got my blood pressure checked and was deemed ok. Also purchased a BP monitor to check at home and BP was perfect, not too low or too high.

Headache passed, but then I started to feel ill - I'm not normally physically ill so I knew something was not right. Four days in after abdominal pain, lower back ache, cramps in legs, headache and general feeling of confusion I checked for ketones with a ketone stick, was at ++++ next day checked again when up and same ++++ BP fine and BG in 10's.

Decided to speak to duty DN who initially thought I had a virus and advised me to stop Dapagliflozin, if symptoms continued then it was a virus, if they disappeared then blame the drug. I then mentioned the ketones and she asked me to check again and she would call back. I checked still at ++++ and so given my symptoms she sent me to A&E. I fear had I not mentioned the ketones she would have just gone with the virus idea.

Triaged in A&E blood ketones at 3.6 of course doctors were confused as BG's fairly normal, at this point reading on BG monitor was 9.2. That morning I was struggling to eat, felt sick and was nodding off in the chair - not like me. I was also incredibly thirsty and was drinking loads of water, mouth was extremely dry. When I mentioned the drug and the connection to DKA the doctor did his research and started to treat me for that. Fluids administered, bloods taken, chest x-ray (breathing was a little fast) ECG done. Spent 5 hours in A&E before being moved to ward. Spent three hours on the ward and stayed for two nights until bloods improved.

Ketones continued to increase over the next few hours, but eventually started to go down. Back home, all symptoms gone within 24 hours, Dapagliflozin stopped. No ketones showing now on stick.

I'll be honest had I not used this forum to learn of DKA with Dapagliflozin, I might have dismissed it as a virus given the time of year.
Thank you for copying this to here. It is indeed an important message for anyone on one of these medications.
 
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Brunneria

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Just posted this on the thread "Dapaglifloxin - anyone had any experience with this?" but figured I would cross post it here as well.

Hello, magicmoose here - for some reason I am unable to log in with my real account so have created magicmoose2 until I can rectify the issue with the forum team.

An update on my experiences with Dapagliflozin! Commenced on 29/12/18 and reduced carb intake on 02/01/19 gradually saw numbers come tumbling down in the right direction. Started to feel unwell light headed / headache a week in so as advised here got my blood pressure checked and was deemed ok. Also purchased a BP monitor to check at home and BP was perfect, not too low or too high.

Headache passed, but then I started to feel ill - I'm not normally physically ill so I knew something was not right. Four days in after abdominal pain, lower back ache, cramps in legs, headache and general feeling of confusion I checked for ketones with a ketone stick, was at ++++ next day checked again when up and same ++++ BP fine and BG in 10's.

Decided to speak to duty DN who initially thought I had a virus and advised me to stop Dapagliflozin, if symptoms continued then it was a virus, if they disappeared then blame the drug. I then mentioned the ketones and she asked me to check again and she would call back. I checked still at ++++ and so given my symptoms she sent me to A&E. I fear had I not mentioned the ketones she would have just gone with the virus idea.

Triaged in A&E blood ketones at 3.6 of course doctors were confused as BG's fairly normal, at this point reading on BG monitor was 9.2. That morning I was struggling to eat, felt sick and was nodding off in the chair - not like me. I was also incredibly thirsty and was drinking loads of water, mouth was extremely dry. When I mentioned the drug and the connection to DKA the doctor did his research and started to treat me for that. Fluids administered, bloods taken, chest x-ray (breathing was a little fast) ECG done. Spent 5 hours in A&E before being moved to ward. Spent three hours on the ward and stayed for two nights until bloods improved.

Ketones continued to increase over the next few hours, but eventually started to go down. Back home, all symptoms gone within 24 hours, Dapagliflozin stopped. No ketones showing now on stick.

I'll be honest had I not used this forum to learn of DKA with Dapagliflozin, I might have dismissed it as a virus given the time of year.

Hi,
Very sorry you had to go through such an experience! What an ordeal.
And tremendously well done for being so on the ball while feeling so ill.

Regarding your problems logging in, if you email [email protected] giving your details (but NOT your password) then someone will look into the situation :)
Although I suspect it may not happen til next week. :)
 
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Mrs_A_Wrinkly

Active Member
Messages
33
Type of diabetes
Type 2
Just posted this on the thread "Dapaglifloxin - anyone had any experience with this?" but figured I would cross post it here as well.

Hello, magicmoose here - for some reason I am unable to log in with my real account so have created magicmoose2 until I can rectify the issue with the forum team.

An update on my experiences with Dapagliflozin! Commenced on 29/12/18 and reduced carb intake on 02/01/19 gradually saw numbers come tumbling down in the right direction. Started to feel unwell light headed / headache a week in so as advised here got my blood pressure checked and was deemed ok. Also purchased a BP monitor to check at home and BP was perfect, not too low or too high.

Headache passed, but then I started to feel ill - I'm not normally physically ill so I knew something was not right. Four days in after abdominal pain, lower back ache, cramps in legs, headache and general feeling of confusion I checked for ketones with a ketone stick, was at ++++ next day checked again when up and same ++++ BP fine and BG in 10's.

Decided to speak to duty DN who initially thought I had a virus and advised me to stop Dapagliflozin, if symptoms continued then it was a virus, if they disappeared then blame the drug. I then mentioned the ketones and she asked me to check again and she would call back. I checked still at ++++ and so given my symptoms she sent me to A&E. I fear had I not mentioned the ketones she would have just gone with the virus idea.

Triaged in A&E blood ketones at 3.6 of course doctors were confused as BG's fairly normal, at this point reading on BG monitor was 9.2. That morning I was struggling to eat, felt sick and was nodding off in the chair - not like me. I was also incredibly thirsty and was drinking loads of water, mouth was extremely dry. When I mentioned the drug and the connection to DKA the doctor did his research and started to treat me for that. Fluids administered, bloods taken, chest x-ray (breathing was a little fast) ECG done. Spent 5 hours in A&E before being moved to ward. Spent three hours on the ward and stayed for two nights until bloods improved.

Ketones continued to increase over the next few hours, but eventually started to go down. Back home, all symptoms gone within 24 hours, Dapagliflozin stopped. No ketones showing now on stick.

I'll be honest had I not used this forum to learn of DKA with Dapagliflozin, I might have dismissed it as a virus given the time of year.

How much carbohydrate were you eating? Did anyone advise you about what was a safe amount after the awful experience you had?
 

Dollylolly

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Ok I’m on this drug forxiga and have been for a few weeks now and have only had a few side effects of peeing more and thrush which is clearing up.

I’ve only been told to test if I feel a hypo is coming on and my GP states that I’m safe doing moderate low carb not Keto so this is wrong then and I should be wary doing so?

So even if I have good blood glucose I could go into DKA?? Now that’s scary absolutely down right scary.

I did ask to go on insulin and not bother with the other drugs but they said I had to try these first to reduce my blood sugars but surely insulin would of done that too. I got it can make you gain weight but so can the drugs or worse.
 

ringi

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I’ve only been told to test if I feel a hypo is coming on and my GP states that I’m safe doing moderate low carb not Keto so this is wrong then and I should be wary doing so?

Yes, moderate low carb is OK, but very low carb does seem to increase the risk of DKA with sglt2 inhibitors.

Remember that dehydration and low salt are risk factors for DKA, and that people with DKA feel ill.

A cpeptride test will show how much insulin your body is making, if very low, then going onto insulin is the logical option.