Entresto /Cardiomyopathy/ Low EF.

[Butterfly65]

Started taking Entresto yesterday & was wondering how others have got on with this medication?

Like most I'm really struggling with extreme fatigue so hoping this is going to help, but how soon?

I've been told to take just one at night for a week, then to speak with HF nurse regarding any side affects or drop in blood pressure, then to take two per day if all is well.

Is it the norm for us with struggling hearts with low EF's to have low blood pressure because I do know mine was low before taking any meds, & I also know the meds lower it further, so there's been much chopping & changing of my meds to try to get the balance right but guessing that's the norm too?

Thanks -

Michelle

[Cherrelleford]

Hey I have dilated cardiomyopathy and I take the lowest dose of entresto twice a day. I can't tolerate the higher doses. I also take a number of other medications too. I've had entresto for 3 years now it has help me heart. At the start I did struggle with tiredness etc but I would rest or take a nap if needed. Some days I'd have loads of energy but others I struggled to do anything. My ef at diagnosis was 10-15% after 3 years with medication changes, and ICD Fitted and ablation plus other stuff it is now at 35%. Hope this helps a little. Happy to try answer any other questions x

[Butterfly65 in reply to Cherrelleford]

Hello & thanks for response.

I'm on lowest dose too, also take 6 other drugs, including digoxin, bisoprolol & furosomide.

I'm told they can also cause Fatigue which has been my main concern, along with feeling incredibly weak.

It's been 5 months since I was told I had HF & Afib but I feel as though I've been going down-hill ever since,

that's despite being told that my EF went from 23% in September to 34% in October.

I never feel as though I have any energy though.

I've told cardiologist, Hf nurses & GP about this on numerous occasions.

They've tested me for D3, iron, B12 but they are all In range.

Have no quality of life at the moment so that's obviously making me feel anxious & low.

Currently waiting for a cardioversion, have been told that it might not work, or even if it does, it might only put me back in NSR for a few days, then a CT scan, angiogram & an ablation have also been mentioned but cardiologist hasn't mentioned anything about an ICD yet.

I've been using a treadmill at home, I thought I was doing really well last week, one day managing almost 10,000 steps during several sessions throughout the day,

but last two days I've felt completely drained, weak, tired & low in mood.

My HR has been high, it now fluctuates from70's to 90's which is the lowest it's been & my BP average is around 94/68.

I'm tired of feeling tired regardless of how much sleep I get. I just need to know it gets better, as in, will my energy levels ever increase, because if this is it there's no quality of life.

[Blackknight57]

I’m on low dose twice a day, my lvf was 38%, up from 25% after stents in Oct 22. I’m on waiting list for ICD( I still can’t see the point in it as icd usuall only kick in if you have high heart rate)

Heart rate at 54 resting ave , bp is around 110/75.

[StayStrongOver60 in reply to Blackknight57]

I’m no expert, but various types of ICD exist. I have dilated cardiomyopathy and have an ICD-P. It is used to pace my heart and has taken over completely the beating of my heart, and together with medication, has made a massive difference to my ejection fraction, raising it from 24% to 44%. My quality of life has improved considerably as a result. I would suggest finding out which type of ICD your cardiologist intends for you to have fitted, and its intended purpose. Kind regards, Kate

[Blackknight57 in reply to StayStrongOver60]

The problem is if it kicks in constantly, you loose your independence.

Ie you can’t drive after it activates. Min 4 weeks. Reporting it to dvla etc.

I feel normal ish. Slight dips in the bp, not below normal levels, but as it gets toward 100 I feel crappy

[Butterfly65 in reply to StayStrongOver60]

That's interesting Kate, it's only been 5 months since I was told about my HF & Afib, I feel absolutely drained of energy most of the time. Was your HR fast & irregular like mine?

Also my BP is low side & meds seem to make it drop lower.

[Butterfly65 in reply to Blackknight57]

Hello & thanks for reply, can you remember how you felt on entresto initially,

did you feel as though you had more energy for example?

[Butterfly65 in reply to Blackknight57]

I've read that they can higher & lower heart rate. My resting HR has been very high but recently had meds tweaked so it's been fluctuating in the high 90's to the mid 70's & BP on average 94/68, but has been much lower. When too low makes me feel dizzy & sick. I also have A-fib which is probably causing me more unwanted symptoms.

[56dick19]

hi I have dilated cardiomyopathy and have a ICD. I didn’t get on with Entresto was taking off of it. I suffer with extreme fatigue and low blood pressure and run out of energy if I do anything that needs a bit more energy but think that is the Bisoprolol I’m on recently had the dose increased to 15mg

[Butterfly65 in reply to 56dick19]

I was told by cardiologist that many of the drugs prescribed for HF can cause Fatigue. I also take bisoprolol but not as much as you, I'm currently taking 2.5 mg twice a day.

Why were you taken off Entresto, what side affects did it cause you?

I really dislike having to take all of these drugs but we don't have a choice.

[DaphnesMum]

agree with everyone, the secret mix of drugs for you , as we are all different, my EF 21% and drugs being adjusted to get bp,raised ..so as to,stop,heart having to pump so hard , which is then why you get breathless 💕💕

[Butterfly65 in reply to DaphnesMum]

Hello & thanks for replying. The thing is, everytime I have my meds changed or adjusted it seems to make me over-emotional & more fatigued than usual.