Dapagliflozin: Hi, ok I have just... - British Heart Fou...

British Heart Foundation

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Dapagliflozin

30 Replies

Hi, ok I have just joined and I dont really use medical terms. After my heart attack and heart failure 4 years ago my 7 meds were sorted out 3 years ago and I'm happy with my lot. My question and your opinions needed are, out of the blue I have been offered an extra drug DAPAGLIFLOZIN and am about to start taking it . It appears that it is a diabetic drug. Does anyone have experience of taking it and how long has this been a heart failure treatment. I am worried that because of the current state of NHS that I wont get any support. Thanks

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30 Replies

Dear amatorpedalis

A very warm welcome to you and I hope that we can be of help to you. At lest the act of joining will confirm to you that you are not alone.

I am not medically trained so I cannot answer why Dapagliflozin has been prescribed to you.

This really can only be answered by your GP/heart nurse or at a push your Pharmacist.

Many on here are on Dapagliflozin and may all have different answers for you, we know that its not just used in the treatment of diabetes and seems to have an affect on the heart.

My Nurse has discussed me going on this drug as well, and if my blood tests are ok, I shall start them next week.

I was told that they had been proved to help the heart and I would have it as an add on { not replacing anything else }

I look at it as another positive to help me live the life I want to.

Good luck with it all and welcome, we look forward to hearing your journey .

in reply to

Thank you for you comments. As I've said I didn't expect to be offered this drug yesterday, and as I was quite happy sailing slowly along for the last 3 years, it was only after the 'phone call that I began to wonder about what I was being offered.

Heather1957 profile image
Heather1957 in reply to

I think we all have appointments either in person or on the phone where new things are discussed and it is only afterwards that questions spring to mind. Thank goodness there are a lot of people on here who may not be medical people but have a wealth of knowledge that can be so helpful.

Lezzers profile image
Lezzers

Dapagliflozin was originally prescribed for diabetes but it was noticed how well it worked for people with HF. It was licenced and approved by NICE for HF in November 2020 I believe. It's usually prescribed for those who are on the usual cocktail of meds but are still symptomatic, it works well at alleviating symptoms and improving the heart function but as with all meds it's doesn't work for everyone.

in reply to Lezzers

Thanks, your time line for NICE approvable makes sense as my meds were set up by April 2019 and I haven't had a review since.

Curlyman83 profile image
Curlyman83 in reply to Lezzers

Spot on…I’ve just been started on Dapa to compliment my cocktail of other drugs: Entresto, Bisoprolol et al.

So far no side effects other than peeing an awful lot, which I’m lead to believe is normal. It can lower BP and my BP is always on the lower side, but so far, so good for me.

Lezzers profile image
Lezzers

My husband has HF and started taking dapagliflozin bout 6 months ago, it made a big improvement in his symptoms. Its been licensed for HF by NICE since November 2020 and is usually prescribed as an 'ad on' med when your heart meds have been optimised but you're still symptomatic. It doesn't work for everyone but if it does work it can make a big difference. My husband says until he started in this med he hadn't realised just how slow he'd become.

in reply to Lezzers

Thanks, I like positive replies and I will give it a go. I will be checked [bloods etc] after 28 days to see if I am coping. As the nurse/pharmacist said I was set up with the 3 most common drugs for HF and this is now the 4th. I take your husbands point about walking speed. When on your own it is hard to judge pace, but I walk weekly with the local health walking group [ mental as well as physical] and I get a kick when I can easily keep up. Now I might race to the front!

Lezzers profile image
Lezzers in reply to

I hope it works for you, perhaps you'll let us know. Just as an aside when I said my husband hadn't realised how slow he'd become he wasn't just referring to walking but in everything he did, his energy levels improved within just a couple of weeks from starting the med. Good luck with leading from the front

Thank you for your post. Although I have several ailments diabetes is not one of them. I was informed of my suitability to TRY dapag in a telephone review of my meds yesterday and at that point did some research leading me to here.

uzininemm profile image
uzininemm

Hello and welcome, I am not a diabetic and I was prescriped this with 6 others last year by my consultant on my release from hospital.

I noticed on the pumping marvellous website, that this was new for heart only treatments and this fact actually helped me mentally first as I knew I was on the most recent treatment (and I haven't stopped telling people about it!)

I don't know what this one drug has done for me but 8 months on I am still here, I have no side effects and feel fine considering what I have been through. I am so grateful.

I hope it works for you.

captscott profile image
captscott

I've been on it for about 6 months. I'm not a diabetic but understand from research that it improves risk of dying from hf related issues by about 10% over and above the other meds. only issue issue it can cause thrush due to constant release of sugar in urine. Research also suggests that its a better add than swapping an ace inhibitor like ramipril for entresto, though i'm on the whole gamut of drugs ie inspra, beta blocker and statins. awaiting next echo later in year to see if any improvememt in ejection fraction, current 30-35%

make sure you get bloods tested regularly

woodygilly1 profile image
woodygilly1

Hi I got started on this, it's got nothing to do with diabetes, for you. This drug was trialed and all the diabetic patients showed a massive improvement to their heart failure it is a powerful diuretic (makes you pee a lot), so it's licenced for heart failure. I have no idea how, but if you not diabetic, it won't effect your blood sugar X x

Bigsock1234 profile image
Bigsock1234

I was given dapa early on in my diagnosis last year, I'm sorry to say I felt awful on it as not diabetic just mild HF, I came off it, good diet, exercise I'm almost back to normal heart now

David_A profile image
David_A

Hi Amatorpedalis,

I've been on dapagliflozin for over a year now and my Cardiologist says it's prescribed for HF patients that have low ejection fractions. I've been on it for over a year now and haven't notice any side-effects since taking it.

Initially it had to be prescribed by my Cardiologist but now GPs are allowed to prescribe it.

The NHS web site has some more info on it if you're interested. This is the link nhs.uk/medicines/dapagliflo...

Also both Wikipedia and YouTube are good sources for getting more info on medication.

Dave678 profile image
Dave678

After my 2nd HA last year the Cardiac Nurse was really keen to get me onto it (together with Entresto) to improve my EF from the low 30s. Been taking for about 6 months now and only problem was the thrush symptoms which are now easily controlled by using Canesten cream & Cranberry tablets. Like “captscott” said earlier - I hope it results in an increased EF when they measure again in a few months + overall I’m feeling fine - not out of breath etc which hopefully is due partly to the Dapagliflozin.

jrcsheffield profile image
jrcsheffield

Hello, I have been on a double blind trial for Dapagliflozin since April 2021 , my cardio Professor told me at the start of the trial that the trial was for people post heart attack and it is for three years duration.I had a blood clot form in my heart,followed by a Stemi heart attack and three strokes after mountain biking.

I had to sign up within a week as a condition of the trial.

About 6 weeks after the HA I started a gradually building excercise schedule of walking,indoor and outdoor cycling.

For 6 months following 2 echo scans my Ejection fraction stayed at 35%.

At 9 months however following an MRI scan for ICD suitabilty EF was found to have jumped to 48%.

We do not know whether or not I am taking Dapagliflozin or a placebo, whether it was the 1,000+ miles of excercise or a combination.

I like to think it was the Dapagiflozin!

Good luck to you and all out there.

John.

Asti7 profile image
Asti7

I was on the trial for Dapagliflozin and am now going on this drug with my other meds. Over the last six months of trial my myocardial function has improved. It is a diabetic drug and one must be aware of implications of sugar being excreted in urine, but its benefits on the heart are well documented even if not fully understood. This information should be covered be medics where I got my full explanation from. Even got a call from GP practice once I handed in prescription from cardiologist. Good luck I hope it works for you.

All I can say is make sure you get a prescription for Canesten at the same time, I tried it for ten days and had to stop. Thrush as my Wife used to tell me is no joke! It may be a good idea for you to read the results of the trials.

Hashh123 profile image
Hashh123

I’m In roughly the same boat as you but quite new to the whole HF and heart attack

I also take the dapagflozin… I was told it’s usually for diabetes but even though I’m not a diabetic this medication has proved to help with heart failure

If you start taking it and dont get any side effects etc then might as well keep taking it.

in reply to Hashh123

I would like to thank all of you who have shared your experiences with me of using dapagliflozin. It is reassuring to read them and is better than just having the large Forxiga package leaflet to rely on. Once again a big Thank You.

Silvasava profile image
Silvasava

I was put on Dapaglaflozin in September, I'm not diabetic, I have AF and DCM. My energy levels have improved, no side effects so far. I've an echocardiogram today so keen to see what my EF is 😁

relaxedcrocheter profile image
relaxedcrocheter

Hi there!I am like you, I’m not great with technical terms.

I had a heart attack and moderate heart failure in June last year. While in hospital I was asked if I would take part in the trail for dapagliflozin. The trail was already ongoing so I guess that I am purely providing extra data rather than breaking new ground.

I was told that it is a known and safe drug for treatment of diabetes. That they were trailing it for use with heart attack patients as it helps the heart tissue towards a swifter recovery.

I don’t know if I am on the drug or a placebo. To date no side effects.

Hope this is a little help for you.

Snackjack profile image
Snackjack

I was given Dapagliflozin (I haven't got diabetes), I did get 3 of the side effects, unbearable vaginal itching, constantly going to the toilet (about every hour during the night) and big drop in BP. I decided to stop taking it. I did tell my Heart Failure Nurse the next time I saw her that I wasn't prepared to take it because of the side effects constant impact on my daily life and not getting more than an hours sleep at a time was taking its toll. I guess we are all different and what is OK for one person is not for another.

Alison_L profile image
Alison_L

Hi FootLover(!) I was prescribed Dapa by my cardiologist last year, although that was partly because I had just tipped over into diabetes, but wasn't yet on any other drugs for that. Unfortunately, I immediately got excruciating back pain and had to stop the Dapa after 2 weeks. (The back pain took another 3 months and several visits to my osteopath to get rid of!).

Always worth trying something new, but don't be afraid to say if it doesn't work for you xx

jrcsheffield profile image
jrcsheffield in reply to Alison_L

Saw your post, I don't suppose you were on Colchicine medication at this time? That really floored me like a kick in the kidneys,cardiologist stopped it straight away and pain was gone in 24 hours

Alison_L profile image
Alison_L in reply to jrcsheffield

Hi jrc. No, I haven't come across Colchicine, although a quick search on NHS says you need to be careful when mixing it with heart drugs. Some of these meds may be brilliant at what they're prescribed for, but have the most appalling side effects!

nilmonisikdar40 profile image
nilmonisikdar40

Yes it was marketed initially for type 2 diabetes for found to be effective in heart failure by getting rid of salt and glucose. I am pleased to say I have used it and quite happy without any side effects but recently I developed quite large area of reddish scaly rashes and very itchy affecting the legs. Although it is not mentioned in the leaflet accompanying, I have stopped it, have used steroid cream and gradually going. I am going to report in Yellow Card system. I advise you to start it and see how it goes. Please note the skin lesions in my case started 3 months later.

Geoff51 profile image
Geoff51Heart Star

I had my HA 12 years ago and have been on the usual cocktail of drugs for years. Nov 2020 following a negative PCR test and Chest X ray I was told my heart was enlarged and was referred to a cardiologist. in the follow up Dec 2021 I was put on Dapaglifozin and my Bisoprolol was increased and my Simvastatin changed to Atorvastatin higher strength. I have been on Dapaglifozin for just over a month now and have been feeling better in myself since, I am borderline diabetic also, the only thing I have noticed is needing to pee a lot more, and havent had a single night without getting up to pee, some of which is my age. I have now been put on Amlodopine for high blood pressure. I was told the Dapa was a double edged sword in that as well as helping with T2 diabetes it also took some of the strain off of the heart. Hope that helps.

Linusquilter profile image
Linusquilter

I was diagnosed about 15. On-The-Go ago with heart failure and was told that this is a drug that is one of the 4 that they like us to be on. I have had no trouble since starting to take it.

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