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 effects 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
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Butterfly65
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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
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.
Iām on low dose twice a day, my lvf was 38%, up from 25% after stents in Oct 22. Iām on waiting list for ICD( I still canāt 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.
Iām 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
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.
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.
hi I have dilated cardiomyopathy and have a ICD. I didnāt 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 Iām on recently had the dose increased to 15mg
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.
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 šš
I'm on the highest dose of Entresto, the first 2-3 weeks I felt really tired and slow but it fades away, then when I had each dose increase the same thing happened each time but with what felt like more intensity, felt lethargic and drained for a couple of weeks, then that fades away and I started to feel improvement.
My cardiologist said its about finding the right balance, she told me that in an ideal world everyone would be on the highest dose as they would see the best improvements but higher doses are not tolerated by everyone... I was on the middle dose then and was complaining about how crap I was feeling, but after hearing that the biggest gains come from highest dose, I was determined to grind it out to get max dose, and I did it, and It was defo worth it for me as the negative effects fade after a couple of weeks & now my EF has risen 25% in the last year
Hello & thanks for your reply. Encouraging to know it's worked out well for you,
so it seems as though we have to just try to persevere through the first couple of weeks & then hopefully come out of it feeling a bit better.
I swallowed my first entresto on Friday evening, soon as I woke Saturday morning I felt a bit nauseous, drained & over-emotional but I had spent most of the previous day at the hospital after a late morning appointment, & then 3 & half hour wait for Entresto prescription so that normally tires me out too.
I'm 59 but so far I've always been the youngest person sitting in the waiting room in cardio investigations, so you & others who are much younger than me must notice that too.
Sorry, wasn't sure if you meant your EF has risen by 25% or up to 25%?
Do you still have water retention & do you think It's something we will have to deal with for the rest of our lives?
I still feel as though I'm carrying water weight despite being on diuretics twice daily.
I do have days where I can feel fluid build up so I just pop some furosemide as and when needed, my cardiologist lets me choose my dose to manage any fluid retention, usually feel it on belly and ankles first for me.
Some days I just feel weaker, heavier, slower & more breathless, its just the way it is, all part of having heart failure I guess. I have to plan out my weeks with rest days to try and minimise the days where I'm too knackered to do anything. Its still alot better than before the medication! I could barely stand up tbh, now I can go to cardio rehab classes and work on building up my EF as much as possible.
I think I am the youngest in my area (if any of them are younger than me they look very rough for their age, lol) I know I had one of the lowest EF's in the group when I joined too... Anyway, give the Entresto a good go and learn to plan out your week (energy wise) and learn to read your body, you cant go far wrong if you keep that in check š
November '23, I was feeling shit for a couple of months but I thought it was heartburn until I couldnt breath from fluid on the lungs and my feet blistered and filled with fluid like footballs, then I was rushed to hospital.
My resting heart rate was over 120BMP, but with metoprolol and ivabradine its down to 65-75BPM now š
The blisters sound absolutely horrendous, must have been a very frightening time for both you & your family.
Did they burst?
My HR was 180 bmp at rest end of August last year.
It's only just come down to around 85 this week since having meds tweaked again but because I have Afib it's erratic so can still go from 85 to over110.
Also recently learned that afib can also effect EF.
My lungs, feet, lower legs, ankles & tummy were massively swollen too & I was also breathless.
I lost a stone & half within 11 days.
I'm not that big for my height, my normal weight should be around 9 stone but I'm 2 Stone heavier.
Difficult to exercise when you feel so tired but I know that extra weight has to come off to take burden off of my heart.
Yeah one burst in hospital and I got sepsis, they called my family round as they thought my heart was not strong enough to fight it, blah blah, dropped 4 stone... Its killed nerves in my foot, but didnt kill me š
Christ, thats fast! Beating faster than a techno song.
Yeah same as, legs were puffy as anything, I had fluid all over, lungs were filled too, even effected my eyesight. Crap times!
Focus on dialling your meds in then baby steps with exercise until you can get into a comfortable routine that exercises your heart without giving it a kickin'
Omg ....if one blister burst & you got sepsis how many others did you have & what happened to them, š did they just shrink overtime with meds? Four stone is a massive weight loss in such a short time, how did it all impact your eyesight & how does your foot feel now its lost some nerves, does it feel numb in some areas?
As the first one nearly killed me I asked them to sterile pop the others so they didn't get infected either as they were just getting bigger and were going to pop anyway, after 2 weeks they did pop them and used iodine patches on them. The infected one I had to have a doctor scalpel all the bad flesh off, that was not very nice. When I was finally at home, the first time a managed to get trainers on and walk around some blisters came back from my new skin rubbing... I used a sterile pin to tear them as soon as i noticed them getting bigger, then phoned Dr for iodine patches and healed them up myself, wasn't about to sit back and let them grow again!
The big ones covered my whole top of my foot and on top of toes, then I had smaller ones on ankle and back of my ankles, once they were all popped I had to lay with my legs raised way above my head for weeks.
My heart shut down or slowed some other organs to preserve itself and take the pressure off itself and that's why the blisters happened apparently, its amazing how much stuff your heart does, you don't notice until it starts creating drama.
I couldn't really walk properly for about 2/3 months as my feet were heavy bandaged and any pressure on the wounds was extremely painful on my right foot, my left was nerve damaged and I kept having phantom water feelings, ice cold, burning and sensations that a blister just burst again on it, it was all phantom feelings. Going up stairs on the foot is still weird as had to work out when my foots properly on the step šI'm used to it now.
My eyesight went downhill really fast within 2 weeks when I was in hospital, still not sure why as its not so bad now, so it was attached to heart failure somehow.
That must have been so very painful for you, you've certainly had alot to deal with, hope they gave you ample pain relief.
Funnily enough I've always suffered with blisters on my feet, especially during the warmer weather with any new footwear.
A couple of months before being admitted with HF I had a problem with my eyes. Woke up during the night with swollen face & eyes that wouldn't open. Spent night in A & E waiting for an eye Dr.
That's when they first discovered my heart was racing but didn't bother to do further tests.
Also meant to ask you how often you go to cardio rehab & for how long because I really need to up my game exercising at home. I was just given a red resistants band initially & then I was left to it to continue at home with the odd phone call every few weeks to see how I was getting on.
Just read that the higher the EF, the less likely we're to experience fluid retention.
It was 2x a week for 12 weeks, it included classes with dietitians, cardiologists, pharmacist, mental health team etc and was all under one roof, it was awesome! after that I was referred to a local class once a week which I still go to now alongside 2 trips to the gym each week.
Yeah you are right about the higher EF the less fluid retention, I used to have to take loads more diuretic than I do now
Have you had any referral places or heart charities near you that run cardio classes?
I think I was really lucky with mine, they had everything under one roof where all the specialists work together with you without you having to be passed about to loads of different departments that don't talk to one-another.
Ask your HF nurse or cardiologist where you can go from now, must be something local to you?
I've moved back in with family now so I have lots of extra support all around me.
Sounds like a much safer option to move closer to your hometown, if heart failure isn't going anywhere then at least make life easier on yourself and get yourself closer to help. With ambulance times today, I wouldn't want to live 35 mins away from hospital, at current ambulance times it will take them 4 years to reach you. š
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Entresto 
Hypertrophic Cardiomyopathy 
Afib low ef
Newly diagnosed with cardiomyopathy
