Entresto : Hi everyone, Can I please... - British Heart Fou...

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Entresto

Familyk profile image
55 Replies

Hi everyone,

Can I please have your experiences on Entresto. I am hoping to start in 4 weeks time on the lowest dose. My EF is 32 so really hopeful that this will increase.

I'm so happy to finally have a plan moving forward but would like to know what to expect from people that have actually been taking it.

Really appreciate your help.

X

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Familyk
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55 Replies
Cherrelleford profile image
Cherrelleford

Hey.I take entresto 24/26 which is the lowest dose. Been on it for a year or just over. My EF is 15%. I've not been able to increase to the higher doses as my body won't agree with them. I've had no issues with taking this tablet. It's one of the gold standard tablets for heart issues.

Glad to hear you have a plan in place x

Familyk profile image
Familyk in reply to Cherrelleford

Thank you for replying. Has your EF increased at all? I have really low blood pressure so just hoping I can tolerate it.

Take care x

Cherrelleford profile image
Cherrelleford in reply to Familyk

My EF was 10% but after almost 2years and many medication changes, appointments etc it's gone up to 15%. I know some people on here have had bigger increases but everyone is different. X

Familyk profile image
Familyk in reply to Cherrelleford

Any increase is good 👍 most importantly is that you are feeling the benefit x

1mjd profile image
1mjd in reply to Cherrelleford

been on entresto for 18 months after ICD fitted Ef was 25 now 35, started on 24/26 now on top rate with the help of my local cardio specialist nurse( chronic runs to start with) she helped me to get used to it by suggesting different doses, now no probs

RufusScamp profile image
RufusScamp

I am on the max dose, and my EF has improved from 20 - 60%. If you can tolerate it, go with it would be my advice, for what it is worth.

am1875 profile image
am1875 in reply to RufusScamp

Aside from the excellent EF, are you feeling a lot better? Thank you.

RufusScamp profile image
RufusScamp in reply to am1875

I didn't really feel bad in the first place, so I can't say I feel a lot better!

CrazyLif profile image
CrazyLif

I am on lowest dose, as I can’t tolerate a higher one. But that is fine as my EF went from 39 to 60.

am1875 profile image
am1875 in reply to CrazyLif

Hi. Mind saying how long you’ve been taking it and if you feel significantly better due to the increase in ef? Thanks!

CrazyLif profile image
CrazyLif in reply to am1875

good morning am1875

I have been on Entresto since January 2022.

Yes I do feel significantly better, but not completely back to normal - but then I don’t know if you ever do. I could definitely feel the difference as my EF increased! I was still not feeling well, but I could function much more normally with out loosing my breath. At my worst I just couldn’t breath. I would be panting and exhausted from just going down stairs and having breakfast (I also had no appetite or interest in food and lost loads of weight).

It has been a slow but steady trip, as I was told it would be. Last summer I asked a doctor if I was ever going to be back to normal again, and she said that I needed to be patient. She explained that it was as if my heart had been beaten to mush, and that recovery takes time. She said I would not feel normal again for another year. And her estimate was about right. I am not completely my old self, but then as I said I am not sure we ever will be. To be honest maybe it is also due to other things happening in my life too. I have had a bad run of shit stuff happening, so generally overwhelmed anyway.

I am very tired, and still get physical tired much faster than before. But then I am on 4 pills a day for my heart, so it really could be any of them or all of them that contributes to this.

am1875 profile image
am1875 in reply to CrazyLif

Hi. Thank you for your reply. My cardiologist said the effect is that Entresto counters the mechanism that causes heart failure to progress and slows and can stop the progression. I’m relatively sure this is how he phrased it but don’t quote me. I’m paraphrasing. Seems like I’m always wondering exactly what he says after I leave. Maybe he’ll allow me to record our conversation. Cheers.

irishwife93 profile image
irishwife93

My husband has been switched from Ramipril to Entresto very slowly over the course of several months due to his low blood pressure. He started with one tablet of the lowest dose in the morning, then once his body adjusted he was taking that twice a day. He’s now on the highest dose in the morning and the middle dose at night for a few weeks until he can switch to the highest dose twice a day. He noticed a huge improvement fairly soon after switching in his overall well-being. His breathlessness has reduced and he’s more physically active. With the most recent switch to the higher dose, he’s been waking up earlier in the mornings with more energy. It seems to suit him really well, but he hasn’t had an echo yet to see how his heart has responded. I would be shocked if his EF hasn’t improved given how much better he feels, apparently it takes time though. Many clinical trials showed an increase in EF so there’s a good chance yours will go up. Best of luck with the switch, keep us updated on your progress! And if you’re worried I’d recommend calling the BHF helpline to chat to a nurse, they’re super helpful. Obviously your own cardiologist/doctor would know the most about you but it can be difficult to get appointments and face time these days!

nilmonisikdar40 profile image
nilmonisikdar40 in reply to irishwife93

I am so pleased that your hubby has responded so well to Entresto with adjustment of dosage regime by fine tuning. Have the medics mentioned anything about the minimum ejection factor in case you hubby requires any surgical procedure?

irishwife93 profile image
irishwife93 in reply to nilmonisikdar40

Thank you, I’m delighted too! His ejection fraction was 14% on his last echo - this was before being switched from Ramipril to Entresto. He has had an ICD fitted recently because of the low EF but will be given another echo on February to see whether his EF has increased since switching meds. I would be surprised if it hasn’t, given that he feels so much better on the drug. But we will have to see! I hope that answers your question?

am1875 profile image
am1875 in reply to irishwife93

Hi. Hope everything is improving. Has your husband’s ef increased since on the higher dose? All the best.

irishwife93 profile image
irishwife93 in reply to am1875

hi there and happy bank holiday weekend! His last echo results were 30% by the computer algorithm, but the imaging technician disagrees and thinks it’s more like 20-25%. Still an improvement nonetheless and he’s not even on the highest dose - he’s been on the same dose for ages now because of high liver enzymes. They’ve changed his statin in the hope that the liver will stop complaining so they can start increasing the entresto again. Fingers crossed 🤞🏻

am1875 profile image
am1875 in reply to irishwife93

Good morning. Thank you for your reply. Is he on the highest dose in the a.m. and the middle dose in p.m.? That’s a nice increase in ef. I was on middle dose and my creatinine increased so I went to the lowest dose to see if it was the Entresto. My creatinine went back down. It’s a matter of constant tweaking. We will try half pill in a.m. and whole middle dose pill in p.m. Then possibly lower dose of Eplerenone. Energy level holding up still? All the best.

irishwife93 profile image
irishwife93 in reply to am1875

He has been moved back to the mid dose twice a day due to the elevated liver enzymes, they’ve finally changed his statin so waiting for a liver function test to see whether that’s worked and he can go up a dose on Entresto again. Energy level did dip a little, his cardiologist put him on furosemide permanently and a higher dose of Eplerenone as he apparently has a leaky bicuspid valve. Since those tweaks he’s feeling loads better. He’s also been taking coenzyme q10 which is apparently good for energy levels. It is definitely a balancing act!

Hope you are feeling better since being on entresto, try not to focus too much on the numbers but more how you feel on a daily basis!

am1875 profile image
am1875 in reply to irishwife93

Hi. Just looking back over some older posts. May I ask if your EF increased and what dose you’re now taking. Thanks in advance.

irishwife93 profile image
irishwife93 in reply to am1875

Dose is the same and I don’t think there’s been an increase but with my husbands heart so damaged they’re just hoping it doesn’t get any worse!

am1875 profile image
am1875 in reply to irishwife93

🙏🏻

francesw47 profile image
francesw47

If you can tolerate it, its a really effective drug. But we are all different, and lowering BP is something that Entresto does. I suddenly had to stop taking it as I became intolerant - which is a crying shame as it was a brilliant addition to the arsenal and really helped control the symptoms. I understand this type of dual therapy is pretty standard in many European countries. Sadly, once out of my system, the symptoms of HF returned pretty quickly so am feeling rubbish!....Which tells you a lot about the efficacy of Entresto. Go for it, and hope you can tolerate it.

in reply to francesw47

Hi Francesw47. How did you recognise that you became intolerant to it? Was it no longer working or were there side effects?

am1875 profile image
am1875 in reply to francesw47

Nice improvement!

Eastwood25 profile image
Eastwood25

hello, I’ve been on Entresto top dose for almost 2 years, my EF has gone from 22% to 30/35% Entresto has definitely helped me im less breathless, and have more energy, I do get tired some day but probably down to bisoprolol again top dose and it’s norm to have days like that.

Dave678 profile image
Dave678

Hi Familyk + first of all congrats on being offered Entresto! I started on the 49/51 dose (twice a day) in Sept 2021 when my EF was 30-35. Upped to the 97/103 dose in May 2022 but sadly my BP then started going down to around 100 systolic so went back to the 49/51 dose in Sept 2022. EF now up to 35-40 though + feeling fine - not out of breath etc. So, hope it works for you, but watch your BP + feeling dizzy, light headed etc when getting up quickly etc if on strong dose. Good luck!

am1875 profile image
am1875 in reply to Dave678

My cardiologist said I may not be able to go to the highest dose but benefits of either dose can muster excellent results.

Dave678 profile image
Dave678 in reply to am1875

Absolutely am1875 - any dose is a good one in my opinion + you never know, but you might be able to go onto a higher dose sometime in the future. Good luck

am1875 profile image
am1875 in reply to Dave678

Hi Dave. From all accounts, 100 systolic is acceptable. Just a tad on the lower end of the spectrum. All the best.

Aprfife profile image
Aprfife

Good morning, I have been on highest dose of Entresto for 3yrs and I’m doing amazing all the number are great. At the beginning it took a while to get used to it some low blood pressure but everything settled down.

am1875 profile image
am1875 in reply to Aprfife

Great to hear.

Prestwick profile image
Prestwick

Hi, I have been on Entresto for nearly a year. I am on the middle dose and due to low blood pressure will not be able to tolerate the highest dose. An echo done just about 3 months ago showed my EF had gone from 38 to 47. I certainly do feel better. Sadly I am not able to tolerate the 4th pillar of the recommended drugs; Dapagliflozin but the Entresto has been of good benefit and I am grateful for that.

in reply to Prestwick

Hello. Do you know why you couldn't tolerate Dapa? Was there side effects to this drug? Thanks. Im also on entresto and due to start dapa.

Prestwick profile image
Prestwick in reply to

Hi, I was on Dapa for about 3-4 weeks but became increasingly unwell during that time; dizzy,additional fatigue, reduced vision, feeling faint to the point I was almost scared to go out. My BP fluctuated quite a bit and ultimately it was decided that it lowered my BP too much. Within a few days of stopping Dapa I was back to my normal self.

I understand I am very much in the minority with these side effects and that Dapa is a very effective drug in heart failure and so I wish you all the best.

My heart failure nurse has suggested a second go at Dapa but at this point I am only just thinking it over.

am1875 profile image
am1875 in reply to Prestwick

Splendid! I’m on middle dose for 10 days now and 2 of those days I split the morning dose in half and my bp is not as low. Maybe after being on it for awhile I won’t need to split the morning dose at all. Regardless I don’t think I’ll be able to tolerate the highest dose although my cardiologist said the benefits on lower dose can still be immense. All the best!

Harveyone profile image
Harveyone

Hi,could not tolerate Entresto as lowered blood pressure to much.Hope you get on well with it as its the premier drug.Goodluck

am1875 profile image
am1875 in reply to Harveyone

Even the lower dose? Could it possibly be one of the other meds that could maybe be switched? Just curious.

Harveyone profile image
Harveyone in reply to am1875

Couldn't tolerate Entresto for more than two days,just on Ramipril,bisoprolol & eplerenone.doing well.

Hello to you,

It has been a fantastic drug for me taking my EF from -20% to +60% and of course all the benefits that can bring.

I hope that it is successful for you, I had very little side effects and am on the middle dose as other medication lowers the BP as well.

Take care and please keep us informed.

am1875 profile image
am1875 in reply to

Hi Hidden. How long did it take for those results? All the best!

Silvasava profile image
Silvasava

Been on the middle dose of Entresto for nearly 2 years, last echo was about EF45. I couldn't tolerate the high dose as it dropped my BP too low. Put on Dapagliflozin about a year ago but not due for another echo until March, feeling much better although still get breathless. Fingers crossed I'm improving!

in reply to Silvasava

Hello. How was the Dapa drug. Did you notice any improvement? Thanks

Silvasava profile image
Silvasava in reply to

Unfortunately I was hospitalised on NYE with Flu for18 days. Most of my meds have been changed. I'm now on low dose Entresto and still on Dapa but TBH couldnt sayif any improvement as Ive lost over a stone and I'm as weak as a kitten!

srixonad333 profile image
srixonad333

HI, I started on the lowest dose18 months ago and worked my way up to the top dose without any problems. Always had problems with dizzy spells even before Entresto but was managing with them. Away on holiday and got up too quickly and lost consciousness due to low blood pressure. Had a couple of dodgy days and on return got in touch with the team and reduced to the middle dosage and had no problems since. It's one of the four top meds they like you to be on. If you have any problems let them know and they will change it. Wishing you all the best.

Jak8 profile image
Jak8

Yep I would agree with all the above. Moved onto full strength Entresto and my fitness changed dramatically walking 6k in an hour including hill climb. Sadly suffered 2 recent collapses due to low BP but I was also on Inspra and Bisoprolol that were intended to lower BP. All too much. Monitored my own BP strictly and discovered I was in effect suffering hypotension even on the lowest Entresto. I continued with Entresto but stopped Inspra and Bisoprolol aand BP now fine . Still very active but find recent cold spell bit tiring. Go for Entresto but self monitor BP. Take Care and all the best

thecorfiot profile image
thecorfiot

Hi,

I have been taking Entresto for around three years after being diagnosed with dilated cardio myopathy. I am taking the maximum dosage now having worked my way up from the lowest. Fortunately I have experienced no side effects whatsoever. As far as I am concerned it is truly a wonder drug! At the age of 74 years, my heart performance is now perfect for a man of my age and better than many, according to my cardiologist.

I hope that your treatment is as successful as my own has been.

1mjd profile image
1mjd

I am on the top dose, and after problems with tum upsets all is well and my consultant says all my levels are great

Familyk profile image
Familyk in reply to 1mjd

Hi,Just wondering if you had upset tummy? I'm really suffering at the moment and it's impacting on my daily routine.

Due to see consultant on Friday and will mention it. But obviously need to be on entresto and dose increase soon. Also now saying I need to start on Eplererone. No idea how that is going to effect my tummy

Xx

Bigbrian profile image
Bigbrian

hello

I had an EF of 30, severe heart failure. On max dose of entresto within 6 months of heart problems, cardiomyopathy, and after one year my EF was low normal at 50-55. I take the pills every day, never missed a dose and watch my water intake. Fine and feeling great.

Olivia849 profile image
Olivia849

Hi familyk

When i was taking them, i had a reaction of a swollen tongue, only took them for 8 days. I do get reactions from other medicines as well.

Anon2023 profile image
Anon2023

hi. I’m on the top dose and no side effects. I’m also on Dapagliflozin which I’ve also managed to tolerate. My ef was 45 when I started and I’m waiting for a scan to see if it’s improved. I never really suffered from breathlessness and I haven’t noticed any significant changes in terms of my energy levels. I’m on 10mg of bisoprolol so maybe that’s why I’m tired. I suspect that I’m also menopausal so there’s lots of reasons why I’m fatigued. Saying that, I’ve just managed a month in South Africa and coped well with a very hectic schedule. I’m lucky never to experienced any huge symptoms of heart failure but I was put on Entresto and Dapagliflozin as I was told that it could also provide a massive benefit to borderline cases. I live in hope and encourage you to give it a go. X

Glynnw profile image
Glynnw

im on the lowest dose but twice daily for about 18 months.

EF up from under 25 to over 45 at last test.

Elsabounre profile image
Elsabounre

I had EF of 37 a year ago..after 8 months of Entresto it raised to 45..will check again in July..hope it has raised more..but.....it has caused quite unpleasant acid reflux and joint pain..in the hands..shoulder etc

Harveyone profile image
Harveyone

Hi,I could not tolerate Entresto at all was on it for just two days so went back on Ramipril.Doing pretty well though cycling 5 miles a day with a few hill inclines also walking.My ejection fraction was 30% not to bothered what it is now because I feel quite energetic and don't fatigue to much.Good luck with the Entresto

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