Nice to be with you!

[Dabble]

Thank you for accepting me as a member of the Community Forum! I'm from Skegness, having moved here from Spain, where we lived for 10 years. There, I was given laser treatment every 6-8 weeks until my sight started to fail. I am now blind in one eye, with deteriorating sight in the other.
I have been a member of Diabetes UK (formally British Diabetic Association) for 48 years! I am 68 years old and was diagnosed with Type 1 diabetes on my 21st birthday. What a gift that was!
In December 2021, I was diagnosed with Heart Failure and was wrongly prescribed Empagliflozin for 6 weeks. Boy, did I feel so well while taking this medication. Less breathlessness, no swelling of legs and ankles, less fluid around my middle, better control of my diabetes and, in the 6 week period, lost 7.5 kilos. Then I was taken off it, as it was not approved for Type 1 diabetes patients, with cardiology telling me there was nothing more they could do for me.
The fluid is bloating my tummy again, I have swollen legs and ankles, am breathless again and control is worse.
Are there any Type 1 diabetics on here that HAVE been prescribed empagliflozin or dapagliflozin?
If any T1 members have heart failure, what medication have you been offered - if any? I'd love to hear from you.

 

[Cherrelle DUK]

Hi Dabble, welcome to the forum.

Really sorry to hear about the health challenges you've had, sounds as though it's been quite a journey.

How frustrating to experience something that relieves your system only for it to be removed! Have you been able to speak with someone or get a second opinion regarding your care? I understand that medication isn't recommended for type 1's though it might be worth a conversation to understand why it helped and if there's anything with a similar outcome that you could try.

Hopefully you'll hear from some members who may have some insights but we've got lots of info on the forum so do have a look around and let us know if there's anything we can help with.

 

[Lucyr]

was diagnosed with Heart Failure and was wrongly prescribed Empagliflozin for 6 weeks. Boy, did I feel so well while taking this medication

Do you take a diuretic instead? Sounds like peeing more liquids out was the action that helped you.

 

[rebrascora]

Sorry to hear you are struggling with complications and very frustrating and worrying to have something which was helping you removed from your prescription.

Do you take a diuretic instead? Sounds like peeing more liquids out was the action that helped you.

Yes, I wondered that since the Flozins work by triggering the kidneys to work harder at a lower BG level than normal to remove glucose.... but also fluids. Frusemide is the usual one for when you are struggling with water retention. I must confess I don't know much about heart failure but that would seem an obvious medication to prescribe, so if you haven't been given an alternative medication to manage the water retention then ask but I can see that prescribing something "off label" is probably a risk that most doctors cannot take these days.

 

[Dabble]

Thank you, everyone, for your welcome and your concern, as well as your suggestions.
It was a bit of a battle to get my diabetes consultant to converse with cardiology, but eventually a coversation took place and I can understand why the med was removed.
Yes, I have been prescribed Furosemide but can only take 1 tablet every 3 days, due to stage 4 CKD, hency why no other meds are suitable.
My diabetes consultant, after speaking to me and knowing how sensible I am, considered putting me back on it but was overruled.
I am ever hopeful that NICE will eventually approve it with caution.
I was just interested in what meds other T1 diabetics with heart failure had been prescribed and if anyone had been prescribed these unauthorised meds.
I belong to a Heart Failure Support Group where some T1 diabetics in the North East have been prescribed them on a two weeks on, one week off basis. You never know! Thank you so much for your input, support and kindness xx

 

[rebrascora]

Sorry to hear that you also have CKD. I would have thought that the Flozins would be as much of an issue for your kidneys as Furosemide. They both cause the kidneys to work harder from what I understand.

I have to say that sometimes I think doctors lose sight of the big picture but sadly common sense rarely prevails especially when there is a risk of investigation and liability if something goes wrong and someone didn't follow the rules.
Nice to know we have some doctors up here in the north east who are still prepared to go out on a limb for the benefit of their patients, but clearly you are not within their catchment area. Any chance of a temporary move?? It is a lovely part of the world and we are very friendly.
Wishing you lots of luck!

 

[Lucyr]

Sorry to hear that you also have CKD. I would have thought that the Flozins would be as much of an issue for your kidneys as Furosemide. They both cause the kidneys to work harder from what I understand.

I was going to say the same thing. I wouldn’t expect this family of meds to be safe for people with CKD even if was fine with T1, because it makes your kidneys work harder to pee more

 

[Dabble]

Sorry to hear that you also have CKD. I would have thought that the Flozins would be as much of an issue for your kidneys as Furosemide. They both cause the kidneys to work harder from what I understand.

I have to say that sometimes I think doctors lose sight of the big picture but sadly common sense rarely prevails especially when there is a risk of investigation and liability if something goes wrong and someone didn't follow the rules.
Nice to know we have some doctors up here in the north east who are still prepared to go out on a limb for the benefit of their patients, but clearly you are not within their catchment area. Any chance of a temporary move?? It is a lovely part of the world and we are very friendly.
Wishing you lots of luck!

Thank you. Unfortunately no chance of a move, temporary or otherwise. Thank you very much for your understanding. It's a difficult situation. I can quite understand why my diabetes consultant is so against it but there are no other meds available for Heart Failure. Cardiology have discharged me into the care of my GP(!) without even seeing me. When I raise a query with any of the doctors at my practice, they tell me to speak to the cardiologist. It's like banging your head against a brick wall. Apart from being advised by cardiology in a telephone call, to reduce my fluid intake and avoid salt at all costs, that's it (even though my diabetes consultant advises me to drink more to flush my kidneys through. What has the NHS become?

 

[Dabble]

I was going to say the same thing. I wouldn’t expect this family of meds to be safe for people with CKD even if was fine with T1, because it makes your kidneys work harder to pee more

It's the mixed messages (or no messages at all) that cause the frustration. Thank you for taking the time to reply. x