Empagliflozin

[JamietDE6]

Hi
After a year I finally met my endocrinologist. They said not sure if Type 2 or type 1 on honeymoon period - time will tell. Anyway, to improve control further they recommended Empagliflozin. On doing some research I noted some horrific possible side effects e.g Fourniers Gangrene ( the pictures I can never I unsee…)
Anyone out there with experience of this drug? I am thinking of avoiding it to be honest. Grateful for thoughts

 

[Docb]

Would you avoid using a car and all the benefits it might give if you saw a picture of a bad car crash?

If the answer is no, then It is sensible to think about medication the same way where the chances of being affected by the extreme side effects so graphically described by attention seekers are far, far less than the risk of being in a bad car accident. You never know, it might do exactly as it says on the tin and improve your glucose control with all the benefits that will give.

Thats my way of trying to put a perspective on the scare stories you see when it comes to medical matters. Its all about risk management and there are things we do every day without thinking that are far riskier than getting extreme effects from taking medications like Empagliflozin.

 

[JITR]

Why, if I may ask, are they suggesting Empagliflozin when your A1c is down from 106 to 55? You mention a honeymoon period. Would it not make sense, again if I may say so, to focus more on diet than medication at such a time?

 

[JamietDE6]

Hi
Thanks for comments. Agree life is all about risk v benefit. Have to say on the face of it though some of the risks for this drug seem quite severe compared to something like Metformin. Have to say I am inclined to reduce carbs even further than I do at the moment to see if that takes effect. Would still be interested to see if anyone out there is a fan of this drug.

 

[Lucyr]

If they’re suspecting t1 I’m surprised they’re giving you this medication as it can cause DKA at normal blood sugars. My insulin production is low and I had DKA within a week of starting it. Make sure you have ketone sticks and check them if you feel unwell at all

 

[John Gray]

Shortly before my bowel cancer consultant was going to perform the operation to remove part of my bowel (a "right hemicolectomy", since you ask!), he said he had to warn me of the possible side effects of the operation, "which included possible death".
He followed that with "...but we aim to avoid this".

If you paid close attention to all the possible side-effects of medicines, you would never take any.
(Same applies, to a considerably lesser extent, to all food and drink!)

 

[Nayshiftin]

I am on it. For me it’s a lot better than Metformin, the gliptins or Glicazide so it’s a personal choice. However my bloods have gone wrong and my cramp and muscle spasms have got worse, whether related i do not know.

 

[JamietDE6]

Thank you for the further replies. Some still highlight the acceptance of risk. My concerns with this drug are the range of risks and the likelihood v the possible benefit. DKA with normal glucose, UTI, thrush are all referred to as not uncommon. With Fournier at the worst end. I am not sure I am willing to trade 1-2 mmol for this risk. I have used insulin in the past which although was disruptive gave great benefit with very manageable risk e.g hypo, injection site hardening etc. I suppose it all depends what is personally acceptable risk. Thank you for your help though.

 

[everydayupsanddowns]

My concerns with this drug are the range of risks and the likelihood v the possible benefit.

What meds are you currently on @JamietDE6

Are you on basal-bolus insulin?

If so perhaps an alternative way of improving your results is to tweak your existing insulin management?

 

[Lucyr]

I have used insulin in the past which although was disruptive gave great benefit with very manageable risk e.g hypo

I’ve said exactly this to my dr before - I’d rather stick to basal bolus than try all these new t2 meds with potential new side effects. I know what I’m doing with insulin.

 

[JamietDE6]

Hi just to clarify current meds are 2g Metformin plus a statin. Control is not too bad usually 8-9 on waking, roughly the same 2 hours post prandial although I do like a pint…….
I became fairly confident with insulin although hypos were annoying but easier to manage once I had a monitor ( at my expense). Metformin causes the usual side effects , i take the slow release one and have just got used to the occasional downsides ( seems like a reasonable trade off). I do wonder if I would do even better with a background insulin plus Metformin?

 

[maryjaneholland]

Ironically, my GP has just prescribed this drug for me due to complex toilet-related side effects from Metformin, and significantly in another very rushed telephone appointment GP stated "this drug can push 9-10 grams of glucose out of your kidneys and eliminate via urine every day which means it can help weight loss", I ask about possible side effects, GP stated "I'm really busy today, there's doctors off and I've got to go now bye!"...

And then similarly I have looked up all possible side effects my self, and wow, swollen itching red taint (perineum), yeast infection, nail varnish breath, ketones build-up, dehydration, vomiting, weight gain, wrinkled dried out skin (already really struggling with difficult skin conditions thanks!), so it's fine to share opinions and that risk is risk so life is risky, but I am consistently shocked and disappointed about the lack of transparency and clear lack of information for NHS patients to make an informed decision about consenting to and following medication regime, with powerful pushy greedy pharmaceutical companies buying GP's with bribery to prescribe their products over others.

I am really happy and supportive if this drug suits you and works for you, and I am not anti-meds or conspiracy theorist, but I often feel patients with complex medical conditions are being treated like testing guinea pigs to refine drugs and research side effects to avoid any potential legal action in future where big pharma is not 100% certain about these and is literally testing the waters with live human beings as unwitting test subjects... I mean, gangrene, that's surely worth giving up baked goods and takeaway food and alcohol for instead of such risk?

Trying to use all these "strong feelings" to motivate my self and mostly forging ahead with my own lifestyle changes I can explore these issues around achieving remission in the future without medication, but otherwise, it's very punitive side effect regime for relatively small gain, ie, I can cut-out all treats and lower carbs to make-up the 10 grams of eliminated sugars every day if it means I am able to have "normal" social life and sex life as an adult queer person, wham, bam, thank you NHS ma'am... 😉

 

[JITR]

Ironically, my GP has just prescribed this drug for me due to complex toilet-related side effects from Metformin, and significantly in another very rushed telephone appointment GP stated "this drug can push 9-10 grams of glucose out of your kidneys and eliminate via urine every day which means it can help weight loss", I ask about possible side effects, GP stated "I'm really busy today, there's doctors off and I've got to go now bye!"...

And then similarly I have looked up all possible side effects my self, and wow, swollen itching red taint (perineum), yeast infection, nail varnish breath, ketones build-up, dehydration, vomiting, weight gain, wrinkled dried out skin (already really struggling with difficult skin conditions thanks!), so it's fine to share opinions and that risk is risk so life is risky, but I am consistently shocked and disappointed about the lack of transparency and clear lack of information for NHS patients to make an informed decision about consenting to and following medication regime, with powerful pushy greedy pharmaceutical companies buying GP's with bribery to prescribe their products over others.

I am really happy and supportive if this drug suits you and works for you, and I am not anti-meds or conspiracy theorist, but I often feel patients with complex medical conditions are being treated like testing guinea pigs to refine drugs and research side effects to avoid any potential legal action in future where big pharma is not 100% certain about these and is literally testing the waters with live human beings as unwitting test subjects... I mean, gangrene, that's surely worth giving up baked goods and takeaway food and alcohol for instead of such risk?

Trying to use all these "strong feelings" to motivate my self and mostly forging ahead with my own lifestyle changes I can explore these issues around achieving remission in the future without medication, but otherwise, it's very punitive side effect regime for relatively small gain, ie, I can cut-out all treats and lower carbs to make-up the 10 grams of eliminated sugars every day if it means I am able to have "normal" social life and sex life as an adult queer person, wham, bam, thank you NHS ma'am... 😉

While reading this Jason Fung's general comment about T2D came to mind, 'Diabetes is a dietary problem with a dietary solution'.

 

[JITR]

Would still be interested to see if anyone out there is a fan of this drug.

A quote about a "flozin" from the MyDesmond forum, I thought it was a review for my meds. It was a chap from a pharmaceuticals company phoning from a room at my gp's surgery. He said he would change me to another med which was from his company and not use metformin. I ended up changing back to metformin as the new one could have wrecked my kidneys.

 

[harbottle]

While reading this Jason Fung's general comment about T2D came to mind, 'Diabetes is a dietary problem with a dietary solution'.

No, it isn't. It's root causes are far more complex, but are mainly down to genetics, age and ethnicity, and this cannot be reversed.

Diet is a factor that can be changed to help control it, but it doesn't work with everyone, neither does weight loss, and it can always return even if it normal levels have been reached.

 

[Nayshiftin]

A quote about a "flozin" from the MyDesmond forum, I thought it was a review for my meds. It was a chap from a pharmaceuticals company phoning from a room at my gp's surgery. He said he would change me to another med which was from his company and not use metformin. I ended up changing back to metformin as the new one could have wrecked my kidneys.

For me its tummy effects are a million times better than Metfotmin. No vomitying or feeling sick at all.
Could bd my diet but no kidney or toilet problems at al Losing weight i lost more on Metformin howevernever off loo and vomit projectile need i say more.
So yes i am s fan
Does it liwer BS i cant see it do much.
So a fan yes and no

 

[Nayshiftin]

I’ve said exactly this to my dr before - I’d rather stick to basal bolus than try all these new t2 meds with potential new side effects. I know what I’m doing with insulin.

Not many GPs will give a type 2 insulin . Cheapest is Metformin .

 

[JITR]

Mar 10, 2024. From my own perspective I was never significantly overweight which is why I was thought to be T1D initially ( still no wiser). I recently had an Ultrasound though which did confirm a fatty liver. Visceral fat is believed by many to be more relevant to our condition in terms of insulin resistance so perhaps overall weight is not the main factor to need for medication?

Hi Jamie,

When I wrote my previous posts in this thread, I had in mind the possibility you had a fatty liver. Now I see you have. I had an Ultrasound too. The radiologist said the treatment was diet. This confirmed what Professor Roy Taylor had described in his book 'Life without Diabetes'.

I posted about my experience yesterday evening in the Portion Control thread. For convenience I have copied that here below in italics, please scroll down past it for my comment on your situation which is rather different from mine:

Copy of my post from the Portion Control thread.
... in a way you are right, this 'diabetes thing' is pretty simple. I used to wear 32 inch trousers. I ate a little too much for 40 years. I bought some 40 inch trousers, then things went haywire.

A GP phoned. My bloods were sky high. I was diabetic for life. T2D was a progressive condition. She ordered me to build up to the max dose of Metformin asap. Side effects: bad. T2D's potential complications: worse. Another way? Found! Professor Roy Taylor's 'Life without Diabetes' and this presentation describe how to reverse it by losing 15 kg, by any means.* His team discovered blood glucose can come down to a normal level in 7 days. No medication. No complications. Back to my former self. A no brainer.

Wrote down my targets:
1. Lose 15 kg to put my T2D into remission and prove my GP wrong (information for GPs)
2. Go on to 22 kg to get back into my old 32 inch trousers (motivation)
3. Keep my weight down for good (a challenge)

Downloaded Cronometer to track my nutrients on Christmas Eve, blood glucose down to normal on New Years Eve, in remission by Easter (A1c: 39, 104 at diagnosis), wearing my trousers 3 months later (A1c: 32) and still wearing them 9 months on.

That's all there is to this 'diabetes thing' if you are lucky.

* Only for T2D caused by fatty liver, which the vast majority of the newly diagnosed and prediabetics are said to have.

My thoughts on your situation are that, if I were you, I would want to do the following before starting on any new medication after a full discussion with my HCPs:
1. Go on to the Newcastle Diet soups and shakes for 1-4 weeks as set out in this leaflet and monitor blood sugar levels. Professor Taylor displays what happened in the Counterpoint study in this presentation, around 6-7 minutes in as I recall.
2. Discuss the results with my HCPs in comparison with the published results of the Counterpoint study which include this Banting Lecture, this paper and this article.
3. Switch to a real food weight loss diet to return my body and its hormones back to normal and reduce my risks of complications linked with Metabolic Syndrome.

Oh, and to complete my story, I had a Fibroscan when all was said and done. It showed my liver was back to normal.

DISCLAIMER
'If I were you' means what it says. Everyone is different and what suits me may not suit you. For all I know your T2D may arise from any of a myriad of causes other than a fatty liver. My posts are for information only. I am not able to give unqualified advice in any case because I do not know the details of anyone else's condition and I do not have the medical training, experience, or knowledge available to HCPs. All this should go without saying.

 

[maryjaneholland]

@JITR have you studied medicine or biology? Or are you reading up due to your diagnoses? Or you work in healthcare? Sorry to hear Jamie about your fatty liver and type 2 diabetes diagnoses, I am in similar position, but lots of other complex physical health and mental health conditions aggravating each other and wondering how much more meds side effects I can handle realistically.

It's great to hear about other people's goals and motivations and really glad support forum is here, Fibroscan sounds useful, is this available on NHS or do you have access to private healthcare? I only know that my GP suspects I have fatty liver, but there's apparently so many things going wrong with my broken body that's not the main priority, and I don't recommend this to anyone and I'm not posting here to be role model or "poster child" for becoming an Olympic athlete and all-round champion fundraiser despite my busted organs and shortened lifespan, but due to all stress and nausea, starving my self and not eating properly has seemed to stop the worst side effects of Metformin for me, but this is not realistic solution or sustainable way to manage all my medical conditions at all and I would not recommend this, but it's my typical luck, just like "new diabetes drug" potentially damaging my kidneys whilst GP will most likely say "I've never heard of any side effects before".

Same sad story with antidepressants, and psychiatrists will admit "it's not an exact science" and most recently the scandal has turned from Prozac (still prescribed by NHS after years and decades of well-documented dangerous side effects like hallucinations, hearing voices, suicides and legal actions in US), to research showing long-term use increases risks of brain injury, memory loss, dementia and alzheimers, but this is the first (and sometimes only) treatment offered by GP Surgery for any patient presenting with depression, or mental health crisis, or traumatic life event, because it's cheap and time efficient to throw simple script at very complex problem... Bit triggered by watching "Casualty" drama depicting NHS failing every single patient presenting with mental health issues or neurological condition, so for balance some people do survive and win their healthcare battle, and remission plus squeezing into clothes same size you wore as teenager must be very rewarding!

Have discovered some new food items for my new diet I've never tried before - fava bean protein powder used in vegan recipes and plant-based baking, so lower carb than any high carb grain flour, and flaxseed to replace grains/cereals/granola/breakfast cravings for carbs, as mixed with greek yoghurt, it has similar texture to wheatgerm, milled golden flaxseed for all-round healthy breakfasts, Good Luck on your own journey to remission and maintaining lifestyle changes!

 

[Nayshiftin]

@JITR have you studied medicine or biology? Or are you reading up due to your diagnoses? Or you work in healthcare? Sorry to hear Jamie about your fatty liver and type 2 diabetes diagnoses, I am in similar position, but lots of other complex physical health and mental health conditions aggravating each other and wondering how much more meds side effects I can handle realistically.

It's great to hear about other people's goals and motivations and really glad support forum is here, Fibroscan sounds useful, is this available on NHS or do you have access to private healthcare? I only know that my GP suspects I have fatty liver, but there's apparently so many things going wrong with my broken body that's not the main priority, and I don't recommend this to anyone and I'm not posting here to be role model or "poster child" for becoming an Olympic athlete and all-round champion fundraiser despite my busted organs and shortened lifespan, but due to all stress and nausea, starving my self and not eating properly has seemed to stop the worst side effects of Metformin for me, but this is not realistic solution or sustainable way to manage all my medical conditions at all and I would not recommend this, but it's my typical luck, just like "new diabetes drug" potentially damaging my kidneys whilst GP will most likely say "I've never heard of any side effects before".

Same sad story with antidepressants, and psychiatrists will admit "it's not an exact science" and most recently the scandal has turned from Prozac (still prescribed by NHS after years and decades of well-documented dangerous side effects like hallucinations, hearing voices, suicides and legal actions in US), to research showing long-term use increases risks of brain injury, memory loss, dementia and alzheimers, but this is the first (and sometimes only) treatment offered by GP Surgery for any patient presenting with depression, or mental health crisis, or traumatic life event, because it's cheap and time efficient to throw simple script at very complex problem... Bit triggered by watching "Casualty" drama depicting NHS failing every single patient presenting with mental health issues or neurological condition, so for balance some people do survive and win their healthcare battle, and remission plus squeezing into clothes same size you wore as teenager must be very rewarding!

Have discovered some new food items for my new diet I've never tried before - fava bean protein powder used in vegan recipes and plant-based baking, so lower carb than any high carb grain flour, and flaxseed to replace grains/cereals/granola/breakfast cravings for carbs, as mixed with greek yoghurt, it has similar texture to wheatgerm, milled golden flaxseed for all-round healthy breakfasts, Good Luck on your own journey to remission and maintaining lifestyle changes!

Yes i think that is why folk lose weight on metformin your too sick to eat if it disagrees with you I take it your talking about Wygovy , Semiglutide etc when you say getting back to being like a ternager. Sadly I don't eat less possibly more and have nit list on this medication. i think its reached s plateaux as my blood sugar is rising . Making me want go givr up on low carb etc