Entresto drug

[SCGO]

Has anyone been on Entresto 24/26 mg? I've been told it will help improve my EF which is 10% which is very low - it should be about 40% at least. I am 80 next year but on the whole reasonably fit.

[Anon2023]

Hi. I was on the lowest dose of entresto for two weeks then as soon as I tolerated that they increased the dose gradually. I’m now on the top dose. My EF was 46 when I started (so not too bad) then it went up to 53. As soon as it reached 53% (normal range) they discharged me from the heart failure team so it was a double edged sword. I’ve heard a lot of positive things about entresto but if it doesn’t work for you, there are alternatives. I was also told not to focus too much on the numbers as symptoms are more important. I truly hope that this medication works for you and that you feel better soon.

[SCGO in reply to Anon2023]

Thanks for your reply. I have been on Entresto for 2 weeks now and so far I am not suffering any side effects, so when I see the heart nurse on Friday she has suggested that I go onto the next level. I am taking Spironolactone, Bisoprolol and Dapagliflozin at the moment with no obvious side effects. I would just like my ejection fraction to go up instead of down! It started at 18% and is now down to 10% - hope Entresto works for my heart.

[Anon2023 in reply to SCGO]

Hi. You’re on the same medications as me. I was on them for about 6 months before a scan showed any improvement. These scans all have a margin of error (even between technicians) which is why they ask about symptoms. Hopefully you’ll start to see some improvement soon.

[SCGO in reply to Anon2023]

Thanks for your comments. You have given me hope even if it takes 6 months for my 10% ejection to go up 5% to 15%. I went for an MRI scan on my heart to see why it was so low but it looks as though there is a 6 week waiting list for the result. Certainly don't want to have another MRI scan - I was in the tunnel 1hour 15minutes! I'm hoping they find what's wrong with my heart after all that time.

[am1875 in reply to SCGO]

Hi. It may take a little while to show improvement and any improvement will be worth it. Hopefully you’ll move up to a higher dose like many here. It’s all about how you feel as well. Being 80 with options such as Entresto is encouraging. Wish you the best.

[Prada47 in reply to Anon2023]

Hello

Out of curiosity what is the alternative to Entresto not doubting you just wondering what it is, I take mid dose 49/51mg Entresto twice a day BP a little low at 85/52 but not dizzy unless I do something stupid like bending bending down to tie shoes etc !!! EF stable ish at 38 so again not to bad. Just to add my HF Nurse said I have probably reached the end of the line for Meds due to lowish BP. hence question.

Regards

[Anon2023 in reply to Prada47]

Hi. I also asked the same question of the heart failure team as I’m on the highest dose of entresto and was worried what might happen if things started to deteriorate. I was told that they are always developing new drugs to combat heart failure. I was also given hope by a cardiologist who said that heart failure patients are in a better position now than they’ve ever been in terms of available medications. I suppose it depends on individual circumstances and the reasons for your heart problems. I do wonder why that nurse said that you were at the end of the line medication wise, it seems like such a demoralising and unhelpful thing to say. I imagine that it made you feel awful.

There’s a list of the currently available meds on this link bnf.nice.org.uk/treatment-s.... I note that the FDA in the US has also just approved (may 23) Sotagliflozin for treating heart failure and I suspect NICE will follow suit. Medications such as Omecamtiv mecarbil, Ularitide and Serelaxin are in phase 3 of clinical trials and there are several others at other trial stages. It gives me hope to know that such research is ongoing. Xx

[am1875 in reply to Prada47]

My bp started out low similarly. But after several weeks it starting leveling out. I’m now on a higher dose. I think there are other meds in the pipeline. I just had my annual visit with my Cardiologist at one of the top teaching hospitals in the U.S. They have recommended that I add Jardiance to my routine. I haven’t yet until I get a 2nd opinion. It has shown to protect the kidneys I think is what I remember being told. All the best.

[SCGO in reply to Anon2023]

Thank you for replying and sorry for the delay in getting back to you. I am just getting used to working the forum! I'm on my second strength of Entresto now and hope to go on the top dose soon. I don't know any results about my EF but hoping it has gone up a bit. Had no side effects so keeping my fingers crossed! My EF when I started with the heart problems were 18%, then went down to 10% and hoping now that it's gone up! Ive have an MRI scan but waiting to see the consultant. At the moment I am keeping calm about it all. Best wishes

[Anon2023 in reply to SCGO]

Hi. Thanks for replying. I’m on the top dose and feel tired but it could be my heart condition or other meds like beta blockers. Keeping calm is good. I hope it all works out well for you. X

[SCGO in reply to Anon2023]

Sorry I'm late in replying but I'm still getting used to this forum! I'm 80 next year and although I can use a computer I sometimes get a bit confused with it! To update you, I have had the results of my MRI Scan and go and see the consultant on the 16th October. He mentioned in his letter that he wanted to talk to me about having a 'Pacemaker'! Although my EF has gone up to 17% from the 10% it had dropped to, he is still not happy with the result. So I will have to see what he decides. I am seeing the local heart nurse this Friday and I'm hoping she will put me on the top dose of Entresto as I haven't so far had any side effects with it. Keeping my fingers crossed.

Best wishes to everyone in case I haven't replied to you all.

[Anon2023 in reply to SCGO]

hi. That’s good news that your EF has gone up and I hope that the cardiology team will be able to offer you some options for increasing it further. It’s great that entresto doesn’t appear to have caused you any side effects and I’ll keep my fingers crossed that they’ll increase your dose. Let me know how you get on with your appointments. Good luck and best wishes.

[RufusScamp]

I have been on Entresto for a couple of years, the 97/103 dose. My EF improved from 20% to 60%, so if you can tolerate it, it should help you.

[SCGO in reply to RufusScamp]

Thanks, that's sounds very promising.

[theonethatgotaway1]

Hi there. I was 38 when I started entresto after a HA and heart failure. My ef rate was as low as yours at 12% and I was in a very bad way in the ICU. After a cadioversion and starting entresto at the same time, I noticed within a week things started to improve. After a couple months ef was rising, eventually up to 44%. On middle dose now couple years later and ef is down to around 35% and hopefully doesn't fall anymore. Started dapa now.

Anyways good luck with it. All the best

[SCGO in reply to theonethatgotaway1]

Sorry to hear that your ef has fallen slightly again. I have been on Dapa for a few weeks now and I see the heart nurse Friday to go up to the next mg so hopefully my ef will go up a bit then. I think we just have to think positive! Good luck on your improvement too.

[theonethatgotaway1 in reply to SCGO]

How do you feel on Dapa? I noticed the first couple weeks was extreme tiredness. Now after a few months since Jan, i do feel better all round. More of a relaxed heart beat. Breathing noticeably slower. But i have been getting episodes of chest pains. Sharp, burning ones. Sometimes dull. Never exercise related. Just random, usually at rest., fed up with them and the worry that comes with it. Going to try up my steps and try get fitter. Hope your EF has gone up. good luck x

[SCGO in reply to theonethatgotaway1]

So sorry you are suffering. I have been very lucky because I haven't had any side effects with any of my tablets including Dapa and am hoping when I go onto the final dose of Entresto, I will be okay on that too. It is not easy not to worry about side affects and I do feel sorry for you and anyone else who does. I am quite a positive person and once I get over the initial shock, I tend to keep telling myself, that some people have worse things to cope with than me. All the best and try not to worry! Kind regards,

[Letsallhope1]

hello SCGO,

I’m on Entresto too and my understanding is that the lowest dose is just a starting point and if you tolerate it, doctors need to change it to at least the next dose up to see any results. Also, as others have mentioned, it will take e good few months before seeing/feeling an improvement.

What is the plan of your specialist? Have they ask ed you to monitor your blood pressure daily so they can check if you’re suitable and ready to upper the dosage? I remember I was on the lowest dose for probably just a month and being asked to keep a diary of my blood pressure (taking the reading 3 times a day).

After this 1st month, seen that I tolerated it, moved me right away to the next dosage 49/51.

After 6 months my EF has improved from 40 to 50%.

Cardiac team is planning to upper my dosage again but they want to wait for the end of summer.

Please challenge your doctor on why they’re not changing your dose, maybe there is a reason..

Wish you all the best!

[SCGO in reply to Letsallhope1]

Thanks for your info. Yes I do keep a BP diary and my bp is fine. I do all the right things like walking, gardening, keeping the right weight etc. and I don't have any of the normal heart symptoms. They are a bit puzzled about my ef so I have recently had an MRI scan which I am waiting for the results of - they say 6 weeks for results! Anyway, I feel the heart consultant is looking after me as well as a community heart nurse as well as the doctors! I have no complaints at all with them. I am just hoping eventually that the next dose of Estresto will start to make my ef rise and not go down any further!!

[HumanZoomieMachine]

Hey SCGO, I was around 10% when I was rushed into RBHT in 2019. And after arriving on target dose a new months later my scan shows my LVEF at approx 65%.. I have taken part in a number of extra MRI scans for research to I hope they will find out exactly how the reverse modeling works, but I'm very grateful of these drugs that have given me the chance to continue to see my boy continue to grow up.

[SCGO in reply to HumanZoomieMachine]

So pleased yours has gone up to 65%. I don't think my age is on my side as I shall be 80 next year but I do live in hope. I'm afraid I didn't enjoy the MRI scan at all. I was in there for one hour, 15 minutes breathing in, holding, breathing out, all that time without hardly a break in between. I also had a dye in my vein half way through. The bangs didn't bother me at all, it was just the constant breathing in and out all the time so I'm hoping I don't have another one! I'm on the first doze of Entreso as well as 3 other tablets so lets hope it works for me. Best wishes.

[HumanZoomieMachine in reply to SCGO]

In sept I'm due for my 6th ride in the tube, gone to rolling my tongue against the back of my teeth or using it to count to try and distract me from holding my breath..... First time was quite the ordeal, I'm supposed I actually fitted inside lol

[am1875 in reply to SCGO]

In my opinion you may realize positive results at any age or they wouldn’t have prescribed it. That’s my hope.

[Norma27]

Hi. I’m on the middle dose of Entresto and I take the other drugs same as you. I’ve been on Entresto for three years now, my ejection rate was 20% but after 6 months it rose to 35% and now it has stabilised at 43%. I feel absolutely fine. They did try me on the higher dose of Entresto but it didn’t suit me. My blood pressure dropped and I felt nauseous all the time. So I went back to the middle dose. I’ve also been discharged from the heart clinic with annual check ups by my GP.

Best wishes.

[Norma27]

I’m 60 by the way, heart failure at 56.

[SCGO in reply to Norma27]

Sorry for late reply. I'm glad you are okay now. I am hoping that the high dose on Entresto suits me as otherwise the consultant, I think, will definitely want me to have a pacemaker! My EF is still 17% which is too low. I see him on the 16th October so will try and let you know the result then. Best wishes.

[Deejay62]

Hi I went on entresto when my EF was 10% it went up to 15% now it’s 23% but I have dilated cardiomyopathy so to hear you are still feeling reasonably fit that’s very good. I take 1 twice a day. They did try me on 2 twice a day but I kept feeling dizzy. I noticed the difference a soon as I started taking it along with the other cocktail of drugs. Since then as more as been added on its climb to 23%. There are many on her with heart failure who are on this drug. Some very young ones too. All the best.

[SCGO in reply to Deejay62]

Thanks for your info. I'm going to the heart nurse tomorrow and she will most likely put me on the second dose of Entresto. I'm hoping I won't feel dizzy on it - keeping my fingers crossed that it doesn't affect me. Will not get to know my MRI result for another 3 weeks so keeping my fingers crossed again for a reasonable result on that too! I thinking keeping positive is helping me. Best wishes to you.

[Ang5b]

Hi, Entresto has been a wonder drug for my heart failure. I am now on optimum dose which is treble your dose and it’s improved my EF. I can recommend it . Hope you go in ok.

[SCGO in reply to Ang5b]

Hi, Thank you - glad the top dose is working for you. Best wishes to you.

[Winter4519]

Yes they do say that it increase the EF. When I went on Entresto at 24mg/26mg a year ago my EF was 34%. A year later 2023 my EF was down to 20%/25%. My Entresto was increase to 49mg/51mg. Hopefully this will do the trick

[Blackknight57]

Im on it not sure of dosage. My lvef was 25% when i was discharged last october. Now 27%. Im 66