What are your experiences with Dapagl... - British Heart Fou...

British Heart Foundation

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What are your experiences with Dapagliflozin?

laura_dropstitch profile image
laura_dropstitchHeart Star
39 Replies

Hello. My cardiologist is planning to start me on Dapagliflozin in addition to my existing meds. Just wondered how people had been finding it? I'm a little worried about the likelihood of thrush and UTIs, especially as the cardiologist said they'd likely just stop prescribing the drug if that did turn out to be an issue. Has anyone experienced (or not) those side effects, and is there anything you can do to avoid them becoming an issue? I'm guessing maybe limit intake of sugar in diet? Would that help? It's always a little nerve-wracking to mess with medication, but I've heard so many great things about this drug's impact on heart failure and am excited to try it.

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laura_dropstitch profile image
laura_dropstitch
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39 Replies

I will be interested in the replies that you receive. I also am worried about these side effects and the possibility of dizziness due to a drop in sugar level. At present I am looking at the unopened box as though it is going to explode!

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to

Ohh, hope you summon the courage to try and that all goes well! These certainly aren't the scariest side effects I've had to contemplate from heart meds, but may be the most instantly unpleasant :/ I'm definitely going to give it a try - will just be disappointed if something as everyday as thrush prevents me from reaping the benefits to my heart.

in reply to laura_dropstitch

Thank you for your response. Having had an awful consequence of taking entresto I am cautious about anything else new. Reading the replies re peeing and loss of weight, I am so skinny that I may in fact - disappear! 🤣

Kwagmire profile image
Kwagmire

Hi Laura I was put on them 2 weeks ago I wasn’t told they were just in my repeat prescription so started on them as told I don’t even know how I’m supposed to feel on them I’m fine tho just getting on with it as we all do sorry not much of a reply hope your having a fab day lv kwagmire ??

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Kwagmire

That's good to hear, thank you! :)

Barbara72 profile image
Barbara72

I was warned about this also when I was put on to dapagliflozin a few months ago. I’ve had no adverse symptoms at all but have been fastidious in my hygiene since I’m not keen on contracting anything as unpleasant as these complaints!

The only side effect I’ve experienced is a very marked increase in urination, so much so that I cut out my furosemide (after consulting the heart failure nurse). I changed from taking in the evening, to the morning, because of this as I was running to the loo throughout the night.

My urine has a strange smell, but I assume that this is because it contains sugars. Most people lose weight on this drug, but I’m afraid I didn’t. Probably because I reckoned on the sugars being extracted from my body being a good excuse to eat more chocolate and biscuits! 😀

I don't want to cause anxiety or destroy other's trust in what seems to be a good drug for most. If you pm me I will tell you.

Prada47 profile image
Prada47

Hello Laura My Heart Nurse wanted to increase Entresto to Maximum Dose, but Cardiologist said to keep it at 49/51mg twice a day as in his opinion I couldn't tolerate any higher dose !! Heart Nurse has suggested Dapagliflozin but to wait until I see Cardiologist sometime this month, well that is the plan. It is supposed to be an in Clinic appointment with an Echocardiogram prior to the appointment ( we shall see ) lol

I am pretty stable with an ef in the low 40s and the 7.5mg Bisoprolol hasn't really changed my HR when it was reduced from 10mg to 7.5 so I am around low 40s for almost everything except age.

I think Kevin, Lezzers husband has been on Dapagliflozin but not sure.

Do they not prescribe Canestan when they write the script for Dapagliflozin LOL

Hope you are keeping OK Best Regards

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Prada47

Hi Frank. Good to hear from you. Sounds like you are doing pretty well :) Hope you get your clinic appointment and echocardiogram as promised! I haven't been scanned in ages but have also been told to expect an appointment for that soon.

My cardiologist nearly always defers to the heart failure nurse when it comes to medication changes, so I'm waiting for a call from the nurse to arrange starting the Dapagliflozin. I'm glad it's not a replacement for Entresto as I worked blimmin' hard to get my Entresto dose up to where it is - ha! (I'm taking 49/51 in the morning and 49/51 + 24/26 in the evening)

I have read of people getting a surprise prescription for Canesten alongside their Dapagliflozin actually 😅

laura_dropstitch profile image
laura_dropstitchHeart Star

Thanks Peter. I'd happily take a drug permanently if it kept my heart functioning well...but I'm confused as to why you'd still have those symptoms when your heart is now performing at what would be considered (if I'm right in my understanding of EF) a normal level? Have you seen any improvement in symptoms/how you feel since your heart function began to improve? I guess, even if not, that your heart would be under less strain now and be likely to keep going longer? It's all very interesting and I'll be curious to see how I get on with it. Thanks for your reply.

Tvpuzzle profile image
Tvpuzzle

My husband was put on this as, he has diabetis and heart failure, after a, HA and, stent. He had, headaches with it and, was advised to take on a morn instead of night. OK with it now, and has, definitely reduced his, blood sugar readings

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Tvpuzzle

Thanks Tvpuzzle - hope your husband continues to see benefits from this drug.

Rodney10 profile image
Rodney10

I have been taking it since mid April, so far, so good. No problems, although I do not take refined sugar in any form. Just in fruits etc. Hope this helps.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Rodney10

Thanks Rodney10, that is encouraging to hear. And kudos on having the restraint to avoid refined sugar! :)

Lisajb1966 profile image
Lisajb1966

My husband was taking it but has now stopped - several bouts of thrush and balantits. Nurse on cardio team said it will only stop if you take major antibiotics or stop taking it. Spoke to GP, now stopped taking it.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lisajb1966

Sorry to hear that - must be very frustrating. I guess I will just need to wait and see whether the drug agrees with my body. Hope your husband finds a medication regime that works for him.

Eastwood25 profile image
Eastwood25

Hi, I have recently been put on this drug too along with my other heart medication (bisoprolol, entresto & spironolcatone), like you I was extremely concerned re the water infections, I rang my go for some reassurance they were totally useless, but my cardiologist was encouraging. 4 weeks in so far so good, as it’s normally for diabetics only recently approved for heart failure patients I don’t think they know an awful lot.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Eastwood25

Thanks for your reply. Great to hear it's working well for you so far - hope that continues and that you begin to feel the benefits soon. I'll just have to wait and see how it goes, I think. Fingers crossed!

HarryJK profile image
HarryJK

I was prescribed this a few weeks ago (heart failure patient with dilated cardiomyopathy). Have had no adverse side effects. Only thing I’ve experienced is urinating a bit more in the morning and losing a couple of kg in weight but that’s it.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to HarryJK

Thanks for that. I'm definitely not worried about weight loss (that particular side effect would actually be a good thing for me) so here's hoping my body reacts similarly to yours :)

Newmarket1 profile image
Newmarket1

this drug has revolutionised my life ! well sort of. my bs levels much more stable and managable..dont think there are side effects but as the cocktail of drugs i take is so big i couldnt attribute anything in particular to this one in particular...def give it a go

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Newmarket1

Thanks Newmarket1. Good to hear you are feeling well on this drug. My BS levels aren't an issue for me (being prescribed this purely for heart function reasons) but I have high hopes for it regardless. Wil just be so frustrating if I get taken off it for something as mundane (and non-heart related) as thrush. Will cross my fingers and hope for the best :)

Sue-Ann11 profile image
Sue-Ann11

I take it for Type 1 diabetes, to help with my blood sugar control. I think it’s been about 18 months and I haven’t had any infections from it. It works wonders on my blood sugar, I take it in the morning and my ratio of insulin to carbs is half what it is in the evening…I carb count. I don’t know what it does for heart health but it certainly works for me with no side effects so worth a try. Good luck.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Sue-Ann11

Thanks for your reply - brilliant to hear you are doing well on the drug. I'm feeling a bit more hopeful as the reports of infections seem to be the minority in these replies. Definitely going to give Dapa a try anyway :)

laura_dropstitch profile image
laura_dropstitchHeart Star

Thanks thunderstorm2 - good to hear you feel this drug is helping your heart. The cardiologist did say females (esp younger females) are particularly susceptible to infections, but you can see from the comments that it's not exclusively a female problem. Just got to cross my fingers and hope for the best, I guess!

Worked great for me within 2 months. Cardi yesterday said went from severe impairment in left and right V to now around 42%.. Helped to remodel. Really good drug in that regard

CRTD profile image
CRTD

I started on it a month ago as an addition to highest dose Entresto, Spironalactone, Nebivolol and frusemide. As soon as I started taking it I got a sore throat, blocked up nose and was peeing for England. Wasn’t sure the blocked nose and sore throat were related till I saw they are a common side effect. No weight loss at all despite passing so much urine. Cardiologist said they won’t make any difference at all to symptoms and it’s my choice to take it or not but that they have been shown to reduce hospital admissions and deaths in Hf patients

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to CRTD

Hmm, that's a tough decision. I was really hoping to FEEL the benefits rather than just have to blindly believe (again) that life would be worse without the meds. Hope you begin to tolerate it better soon.

Rodney10 profile image
Rodney10

Hi Peter, my hf seems to be under control now. Whether my ef has improved, I won't know until I see the Cardiologist again in July, 3 months after my diagnosis!

Bee20 profile image
Bee20

Hi I had a ha in 2019 and had 2 stents. I am also a diabetic and have been using 10mg dapagliflozin 4 years prior to ha and since, I do urinate excessively and it does seem to affect my sugar levels but I have not experienced any other side effects with it. I was not prescribed a higher dose for my heart and I am now having tests for angina. But we are all different so it may well help you

HiveMind profile image
HiveMind in reply to Bee20

Do you think the Dapa contributed to your HA or your suspected angina?

MONIREN profile image
MONIREN

As they say, everyone is different. Put on dapagliflozin 25mg to control sugars a couple of months ago. Started with symptoms 2 weeks ago, didn't put it down to this. Will talk to pharmacy see what they recommend until I see gp.

Misslowd profile image
Misslowd in reply to MONIREN

Hi I had 2 stents and angioplasty in 2019 and just been diagnosed with type 2 diabetes I’ve been on metformin for 5 weeks and now been put on dapagliflozin I haven’t taken it yet as really scared I’ve had over year of water infections which may be to do with my diabetes metformin has helped massively just scared of water infections. Also what time do you recommend to take it? Many thanks

MONIREN profile image
MONIREN in reply to Misslowd

I didn't think you had a choice of when you take your medication. But I take mine at night. But then, mine gets packed by pharmacy, they go off gp recommended time. We are all different, so you have to be guided by your health conditions. All the best. Moni

Misslowd profile image
Misslowd in reply to MONIREN

Thanks so much reading a lot about it I have taken it this afternoon and everything all good thanks so much everyone on here. It’s a great platform x

madmary54 profile image
madmary54

I am on highest dose of Entresto and 6.25 of Bisoprolol. My eplerernon was stopped due to the effect on my kidneys. Dapa was started, but due to the hair loss I asked to stop it. Wasnt a small hair loss and my scalp was very visable all over top. If hair loss continues it must be due to Entresto. Experienced weight loss which was very welcome. 😁

Prada47 profile image
Prada47 in reply to madmary54

Hello

Just seen this thread HF Nurse wants to start me on Dapa as I am at the top end of everything else. Entresto is 49/51 and they don't want to go to the higher dose. Bisoprolol is 7.5mg and Eplerenone 25mg one every other day Aspirin 75mg and Omeprazole 20mg oh and Pravastatin 10mg. Cardiologist just added Isosorbide2x10mg daily and he wants me to start on Ezetimibe. I am waiting for an appointment for a Stress MRI and the Cardiologist wrote to " Guide the Intervention Approach ". I do meet Nice Guidelines for CRT but Heart Failure Cardiologist wants to Wait !!!

I have a Profusion Defect of 18% of my Heart Muscle which appears non reversible, but should I go downhill from here he would attempt Rotablation of my RCA to see if it would help to increase blood flow. This would maybe increase heart output which at 40% is only moderate Heart Failure. If I understand this correctly my Heart Pumps out 40% but it is only done slowly LOl that is why I may get fatigue and Short of Breath !!!

Best Regards

ps GP did say you would pee a lot on dapa but it would smell Sweet !!! and she won't start it until after the MRI scan results are known.

I only put this other information to show they explore all options open to them ( Cardiologists that is )

madmary54 profile image
madmary54

Dapa and Entresto seem to work very well together. I lost around 10lb as you wee out all the sugar. A friend advised me that when she started Dapa for diabetes, her hair fell out, so I naturally thought Dapa was the culprit. Entresto combined with eplerernon was too hard on my kidneys, so they stopped eplerernon. When the kidneys came back to normal they put my dose of Entresto up to the highest and started the Dapa. Heart nurse was explaining that it opens the blood vessels and helps the heart. On a lighter note, I have to choose between a healthier heart and no hair, or a lions mane and unhealthy heart. I think I'll ask Santa for a wig. Good luck with the treatment X

Buzzy-Beans profile image
Buzzy-Beans

I was prescribed this drug just over a year ago.

Today when I saw my GP about the almost chronic condition of my dry flaky skin and a large number of small red (almost spots) on my feet that itched like mad, but which are also very saw.

The GP then asked me what new meds I was on and for how long, when she herself noticed that I had been prescribed Dapagliflozin and immediately suggested that almost all of my skin problems could be being caused by this new wonder drug!

Apparently it can cause fungal infections as well as dry skin and numerous other matters that I have been experiencing over the past year!!

Needless to say, as of 17.00hrs today, I have stopped taking it!

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