Dreaded results back in of a slight decline in ejection % from last scan in 2021. The note states its minor change. But they do wish to add SGLT2i Dapagliflozin 10mg.
Has anyone tried this medicine? Have you been on it long and seen any improvements? Is it to replace any of the meds below?
I currently take beta blocker, apixiban, entresto, eporlenone and occasionally tadalafil.
Thanks for any input everyone. Was hoping to hit 50 years old at least but even 40 maybe a stretch way things going. 😔
Hi - try not to be too downhearted about this news. There are plenty of people here who have seen their EF bounce all over the place, before holding steady for a long time once their medication and treatment was optimised.
While not quite as young as you, I had a massive HA as a very fit 46 year old which trashed my heart muscle. In the first 18 months my EF rattled around between 34 and 45 before settling (for the past 2 years anyway) at 38. Moreover, thanks to moderate lifestyle adjustments and optimised medication I have remained largely asymptomatic, exercise to a good level regularly and live a full life with a relatively young family. We’re all different, but it’s good to see your medical team are very engaged.
Dapa has not been mentioned yet in my case, but the experiences I’ve read here have been overwhelmingly positive with that drug. Best wishes for good progress with whatever treatment plan is agreed.
Thank you. Some calming words there thanks. Yes it can be worrying at times and i find that is a battle in itself to counter the aniexity of it all which itself brings on symptoms.
Its good to talk to people in the same boat as you who go through similar experiences and medications. Thank you.
I have just been put on Dapa. Not sure why, but I am compliant and take whatever I am told, 11 tablets now. I find that since I stated Dapa. 3 days ago I get more palpatations but I expect that to settle as I get used to it.
I feel for you. Not fun this is it? I am fortunately or un fortunately, living with a Congenital heart issue so iam on lisinopril and spironolactone. But your feeling of anxiety are very normal. I have to admit I have good and bad days. The trouble is you do have two ef figures one for left side one for right. My ef for left is 51% and ef for right is 21% . Because right side is the issue. But my mind like yours is in turmoil. I would like to reach retirement but we are in hands of the experts. Hope you get sorted.
I take Dapaglifozin and a load of other medications, including Entresto. My ejection fraction is sub 20% but now seems to have stabilised. I haven't noticed any side effects.
hi. I was started on Dapa about 6 months ago. I had some initial side effects like increased peeing and some thrush like symptoms. This cleared up fairly quickly and I’ve had no side effects since. I’m on entresto, spirolactone and Dapa now and I’ve been told this is an excellent combination for heart failure. I’m also on warfarin and bisoprolol. I’ve got a perfusion scan on 23/1 but won’t know the results for 4 weeks so I won’t know if they are working until then. I do feel a bit better though and even if there’s been no drastic improvement yet, I’m willing to keep trying. I don’t have any side effects but then I didn’t really have any symptoms of heart failure either. I’m 51 so a bit older than you but I was absolutely devastated when I found out that I had heart failure. I felt like I’d been handed a death sentence but I’m trying to be more optimistic now. Taking so many tablets each day is a constant reminder of my own mortality but I suppose it’s a small price to pay for having some quality of life. Give Dapa a try and see how you get on, I’m told it’s a fantastic medication. Good luck.
I’ve been taking 10mg Dapagliflozin for over a year now with Entresto, Bisoprolol, Epleronone, Atorvastatin etc + really happy with increase in my EF (30-35 up to 35-40%) and overall feeling. Nice to have some positive news with our condition! OK, a few possible drawbacks like extra peeing + thrush symptoms etc but latter handled nicely by tab’s & ointment. Nice that they’re prescribing it for you + good luck.
Thats good Dave. Nice increase there. How do you find the entresto tablet? Do you notice any sides after taking this tablet? I do get brain fog and fatigue some days
You haven't said what your current ejection fraction is. This is not a precise science and your last one might have got you on an especially good day and this one was on a bad day. The EF covers a range of percentages so have you droped from one level to another or are oscillating within your original range?
Hi there, thanks for the reply . Yes they didn't actually say what it was this time round. Last time in Jun21 it was around 44%. I believe they stop the heart nurse coming out at anything over 40%. So the notes said that the changes are minor. That im classed as having moderate LV impairment. So im guessing its still above the 40% mark otherwise they would be calling for the nurse teams. I'm not sure on how much it fluctuates?
As jonah says at the start, EF can bounce around and it sounds as if yours is staying in much the same sort of place it was previously. Its worth asking either your heart nurse or your Gp, what it is, as the GP should get a copy of the notes and you could ask the purpose of this new medication which may be unrelated to the fluctuating EF. Medications are frequently adjusted but rarely explained..
Good morning. I suffered heart failure in September, diagnosed as non-compaction cardio myopathy. EF was 5%, I'm on Dapaglaflozin, amongst others, with no apparent side effects. Follow up MRI/ECG next Saturday. 61 years old.
5% EF. Thats real low. I was 12% in hospital ICU and was in a real bad way
Indeed. No pain, just collapsed and to all intents and purposes died. I was violently sick so my friend got me in recovery position and kept thumping me on the back which got my heart going again!!!Latest test on Saturday shows no improvement but on the bright side it's no worse.
I have been on Dapa for several months and apartfrom UTI's to begin with I can tolerate the medication. However I have been taken off it for a month as I had been loosing weight (I am very slim as it is) Apparently it can cause weight loss and slight nausea. I am on entresto
I have been taking Dapagliflozin for just over a year now on top of the usual cocktail of tablets following my HA in 2010. I can honestly say i have felt tons better in that year than i have since my HA, i have had hardly any angina pains and have not had to use my GTN spray at all in that year. The only drawback is that as it removed excess sugar from your system that you may get Thrush, which is easily sorted with over the counter treatment from your Pharmacy. Please take it i am sure it will help tou as it has me.
Hi theonethatgotaway
I was taking it for about 10 days but stopped it due to getting chest pain and a suspicion of a blood clot and started rivaroxaban but my CT scan was clear 3 days later.
My consultant wrote to me and said that my symptoms were globally unheard of with this medication and recommended that I restart it. I’m due to start taking it again from Monday and hopefully this time with more success 🤞🏼🤞🏼
I’m in my 30’s and sympathise entirely with the anxiety that comes with being told you have heart failure. I hope that dapaglaflozin is helpful for you and you don’t experience any side effects 🤞🏼🤞🏼
Let us know how you get on!
Best wishes
Soap 💛
Thanks for the reply. Hopefully it starts to work for you. It really does suck having a heart problem this young. (but i was always right as a kid, 40 is old aged.. Haha turned out it was for me anyways).
Haha my kids think 40 is old too! How old are you if you don’t mind me asking? My 4 year old son keeps telling everyone that I’m 89 rather than born in 89 😂🙈
Thank you for your well wishes, I hope that you too get on well with the medication.
Stay positive, my Nan always says things are seldom as bad as they seem!
I am 38 or 84 if your son worked it out. 😊
Thank you. Yeh thats right. Alot of it is mental acceptance and just making the best out of a 💩 situation.
All the best
Hi, I’ve been on 10mg of Dapagliflozin every evening since Sept 24th and the only issue I have is that it makes me pee a lot. Apparently it’s flushing away excess glucose as it’s primarily a diabetic medication. It’s been found that it has heart strengthening properties. I’ll obviously be happy to be corrected on this, but it’s my understanding. I’m on 7 other daily heart medications so, apart from rattling when walking, I guess they’re all doing their job. I have several side affects from all these, but they’re better than the alternative. I’m a wee tad older than you a 75 with an EF of 37%. Seeing my cardiologist in Feb and having an echocardiogram and maybe another MRI. I’m really hoping the Dapagliflozin and the high doses of Entresto have improve things. I wish you all the best with Dapagliflozin, and trust it will improve things for you.
You might want to speak with your Dr. about other options like an LVAD or possibly a transplant. Maybe Google: Heartmate 3. Not recommending, just a suggestion to look into. All the best!
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