Anyone taking Entresto? : Hi my... - British Heart Fou...

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Anyone taking Entresto?

Leafield15 profile image
22 Replies

Hi my husband in on the highest dose of Entresto. Has anyone had success with a change in the heart function and if so how long before seeing the increase. His is current 30-35 and no change on last echogram but he’s only been taking the new meds 4 months. Consultant has said he hasn’t been on them long enough to see a change and has scheduled another echocardiogram in November. We were deflated but have everything crossed for the next check. It’s so tough!!!

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Leafield15
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22 Replies
Prada47 profile image
Prada47

Hello

I am on mid dose of Entresto can't get to top due to Low Blood Pressure my ef has gone from 44 to 39 BUT I do have other complications with my Heart so maybe that is not a true account of the Entresto. Heart Nurse said I wonder where it would be without Entresto so Glass Half Full/ Half Empty type of answer. I never suffered from AF but I know Bisoprolol controls my Heart Rate. One real positive from Entresto is that it has sorted out the Ectopic Beats I still get them but a lot less frequent than I used to, so a real positive.

Regards

56dick19 profile image
56dick19 in reply to Prada47

Hi I’m on 49.51mg and have been for about 7 months and have not noticed any difference

RufusScamp profile image
RufusScamp

After I had been on Entresto for 6 months or so my EF has improved from 20% (severe heart failure) to nearly 60%, so it can help. Previously, my EF showed no change over 18 months, in spite of meds and exercise. Fingers crossed for you in November.

Leafield15 profile image
Leafield15 in reply to RufusScamp

Wow that is amazing so pleased for you. That definitely gives us some hope. Thank you

RufusScamp profile image
RufusScamp in reply to Leafield15

Fingers crossed for you. Perhaps I should mention that I also had a pacemaker fitted, although that did not seem to help much.

Leafield15 profile image
Leafield15 in reply to RufusScamp

There is talk of him having a ICU fitted if things don’t improve but hopefully they will. Thanks for all your replies it really helps to hear from others.

Prada47 profile image
Prada47 in reply to RufusScamp

Hello Do you still take Entresto or are you deemed to be fixed ?? Just wondering if Entresto is for life ??

Regards

RufusScamp profile image
RufusScamp in reply to Prada47

I am fairly certain it is for life, as they think my improved condition is due to the drug. The original problem still exists. It's worth it though!

uzininemm profile image
uzininemm in reply to Prada47

Hello yes it is for life, (that was what my cardiologist told me.

Eastwood25 profile image
Eastwood25

Hi, im in top entresto, my ef went from 18% to 30/35% from July 19(upon diagnosis to Dec 20), im on the usual meds plus top dose entresto, had another echo March 22 looks like ef still 30/35% but at least it hasn’t gone done, I like you was very deflated when it hadn’t changed- although I’m waiting for offical figure from cardiologist but I’m sure the lady who did it knows what’s she’s seeing. When I first started in it I felt the benefits instantly so I do think it a wonder medicine(for me anway). I also have an ICD fitted which isn’t as bad as he may think, straightforward procedure normally home same day, just rest the arm afterwards. X

Silvasava profile image
Silvasava

I'm on the middle dose of Entresto, couldn't get on with the higher dose as my BP dropped too low. My cardiologist said my EF was 41% but wanted me on it, last echo was 45-50%. I do feel much better, not so tired and exhausted but still have to pace myself.

Leafield15 profile image
Leafield15 in reply to Silvasava

Thanks for your reply. Could I ask how long it took on Entresto to see the increase in your EF?

Silvasava profile image
Silvasava in reply to Leafield15

Off the top of my head I think it was about 18 months between Echo's so a slow process but in the right direction.

coop61 profile image
coop61 in reply to Silvasava

I have just started on it and felt no effects now on it a week I feel very tired is this normal?

Silvasava profile image
Silvasava in reply to coop61

It may be that your BP is low, to be honest I hav'n't felt a great deal of change but other meds have been tweaked so you need to give it time.

bikerider2022 profile image
bikerider2022

HI, I'm on it too. Started in October. Not had a test yet to determine any improvements. The consultant wants to wait at least six months. He was very enthusiastic over the perceived benefits of it. The only side effect right now is light headedness when getting up to quickly.

francesw47 profile image
francesw47

I'm on top dose of Entresto. Took a while to get there due to low BP but now been taking it for nearly a year. Significant improvement in EF - at last echo it had gone up to 49%. But it takes time. A lot depends on the cause of the HF. In my case the bottom part of my left ventricle has been damaged and is stiff and does not move well when under pressure - so my heart cannot pump blood efficiently. Sadly the damage is permanent. My mitral valve is also leaky - so both valves into and out of my left ventricle have been impacted. The good news is that the pumping function of my heart has been significantly improved by taking this drug - I would not give it up for the world. The downside is that it took time to achieve this. But I do still have to watch it.....no marathon running for me! Pacing is now a word in my vocabulary - I still get breathless and fatigued - and when I do, I stop! Try and be patient and hopefully things will improve.

Prada47 profile image
Prada47 in reply to francesw47

Hello Would you mind saying what your EF was when you started on Entresto ? just wondering what the improvement has been.I wonder if you need to be on the Top Dose to get the real benefit or is the improvement incremental as you move through the doses !!! Just I seem to have been very unlucky with my EF dropping from 44 to 39% since starting Entresto on the middle dose 49/51 twice a day. like yourself my damage is permanent I wonder what effect that has on improvement or lack of it !!

Regards

francesw47 profile image
francesw47 in reply to Prada47

I don't mind at all. Its been an uneven road. At its lowest EF was in low 30s and at its highest around 53% - but keeps falling back. For a while was in low 40s and Entresto improved it to current level of 49%....but whether that improvement will be sustained or not, who knows. All I will say is that for me Entresto has been a bit of a game changer and really improved things. Not everyone can tolerate this drug - for the time being I can. However, I am not medically trained and can only be guided by what the cardiologist says and the constant monitoring. There are two drugs that have significantly improved my heart health - Entresto is one of them. The other is Ranolazine (for angina). I can't really answer your question - I think that is one for your GP or cardiologist. I just grab every improvement and hope its sustained.

Bearded2023 profile image
Bearded2023

Hi there, I’m also on the top dose of Entresto been taking it for around twelve months now. My EF was 30-35 and is now back to around 60%.

Letsallhope1 profile image
Letsallhope1

Even though I’m only 49 I’m on Entresto too.At the moment I’m taking the middle dose but due to go to top dose of my kidney functions and blood pressure still ok.

I’ve been on it since March and although no difference was felt on the lower dose, I think now I'm feeling much better: more energy and can have a good 3km walk without feeling breathless and exhausted afterwards.

bunty55 profile image
bunty55

been on entresto for 12 months my ef went from 38 down to 31 always dizzy and weak going to come of them not for me

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