Hello, I have recently (8 days) been started on Entresto (24/26 mg 2 x daily). The main effects seem at the moment to be feeling considerably more tired, sleep has worsened, plus a touch of lightheadedness. I was hoping to feel better! I’d be grateful to hear the experiences of others and hopefully that things improved over time. Thank you for your attention.
New to Entresto: Hello, I have recently... - British Heart Fou...
New to Entresto
I'm on entresto twice a day and I'm always tired 😫 😩
Thanks for your prompt reply. Can you say what dosage you take, how long have you been taking it and has your heart failure improved or stayed steady? Thank you.
Very early days it’s transformed my health
Hello... I have been through the doses of Entresto for a year starting with your dose then doubling up, then hitting top dose (97/103mg x2 a day)
Personally, I felt grotty for a week or so after starting them and with each dose increase, but then I got used to it and started to feel better each time (less breathless, could do more before any chest pains kicking off, used GTN much less etc)
The positives start to outweigh the negatives after a couple of weeks (They did for me anyway, hopefully they will for you too)
Not everybody can handle the top dose apparently, it's about finding a good life / medication balance, your cardiologist will sort it out, just tell them exactly how you are feeling so they can dial all your meds in.
PS: My EF Went from 13% to 31% from meds I guess, so somethings working.
Thanks so much,TheBesty for your prompt and encouraging reply. Only been on the new med for 8 days so hopefully side effects will ease soon! Early days yet !
Re ENTRRSTO do you find your toes getting very cold
Hey Besty, how did you feel? My enesteo was increased just over a week ago to the middle dose, was doing fine but then last night woke up feeling so sick, back aches, head ache, weakness… worried as it says that those are symptoms of high potassium! Have emailed HF nurse. Be good to know if hat effects others has tho
Hi Ali,
I had the raised potassium thing too, the thing that pushed me over the edge at the time was spironolactone, they dropped my dose from 50mg to 25mg for a while until they re-run my bloods, then I was switched to eplerenone as spironolactone gave me joggers nipple, complained about that and was told that that medication was going to make me grow a pair of tits.... Although I am a fan of them, I don't really want a set of my own. 🤣
...Anyway, back to raised potassium, I know a number of heart meds raise this and for me it took couple of weeks for my body to adjust, so when they halved the dose my potassium returned to normal, then they increased the dose back to 50mg and my body handled it fine after that.
It is good that you have let your HF nurse know about this, no doubt they will be running your bloods every couple of weeks anyway, but always update them, better safe than sorry.
Just got back from having my bloods done this morning myself, I've got diabetes now. Joy 😂 Serves me right for eating all those mince pies and ice cream over xmas. Gave up alcohol, cigarettes, vapes, recreational drugs, junk food, take-aways etc... Now they are coming for my ice-cream. 😱
Did you have your MRI in the end, how did you get on with that?
P.S I was getting headaches around the eyes, back and leg pains & weakness each time i increased dose, my body felt so heavy and everything feels like such an effort... Even bright lights effected me, light sensitivity, all faded away after 2 or 3 weeks. Hope its the same for you
(That it all fades away in quick time... Not that you get all the above) 😂
Ok these symptoms sound the same as me, I haven’t made it out of bed yet today! First day of actually feeling bad! Bit of a worry!
Yeah had the MRI last week, meet my cardiologist on Jan 22 for all results 💩
So worrying!
Shame about diabetes 😫 all fun things gone and now sweet treat 😟
How did you get on with your echo?
Rest up as much as you can, don't push yourself when you are feeling like that.
My echo was a good result. I would have had to have a triple bypass if my EF was 35% or lower, it came back as 38% so I dodged that bullet by 3% 👍 I have to have another echo in 4 months then see about having a defib fitted.
What a relief!! So pleased for you.
Yeah my HF nurse called me 2 days after my echo and said I’d probably be fitted with a CRT thingy! That was a fun conversation as not even seen cardiologist! And still haven’t!
I am resting today, I think maybe I over did it at the weekend by walking 20 miles over Fri/sat/sunday!! But felt so rough in the night. So sick and bad tummy! Not happy, hope to go back to work tomorrow.
Are you working?
Thats alot of miles when your body is getting used to new doses and new medications. My cardio rehab guy taught me to plan out energy over the week and include rest days otherwise I will burn out and feel rough... I still have them rough days anyway but if I over do it I really feel it.
I wanted to get straight back to work, most people do. Occupational health got involved and signed me off and got into my head to focus on health.. Wages are no good to a dead man. Really depends on your job, if its manual with loads of stress then you won't be doing yourself any favours.
I'm thinking of getting back into working from home but I've no need to rush, my main goal is to get my EF to 45% & keep my exercise and cardio rehab up to date, take it one echo at a time 🙂
Yeah might have pushed it!!
I work from home/desk based! So nothing strenuous, helps keep my mind occupied too!
That’s a good aim, hope you get there soon…. So many positive stories out that, keeps me going. Are you in the pumping marvellous Facebook group? Find it a comfort!
Morning,
Thats the perfect type of job for heart failure to be honest, nothing that will hinder your recovery or interfere with you dialling in your medication, plus not too bad if you have days where you feel zapped out of energy.
I hear a lot of good things about the pumping marvellous site, I will have to check it out!
How are you feeling today? 🤨
Yes for sure… I’m lucky I guess!
I’m hoping that the meds will help with EF and to come out of HF, there are so many people who have achieved that on pumping marvellous, then discharged back to GP and given I haven’t had any symptoms of HF i hope my heart can restore! Just need my body to tolerate the meds!
feel fine and back to normal today 😊 thank goodness, was just a bad night!!
Hi WBAS, I've been on Entresto, same dose and frequency as you for a couple of years now, and if I remember correctly, it took me a couple of weeks to feel OK, so you'll probably be the same, hopefully anyway. I have an EF of 25% and won't know if this has improved until I get another echo in May when I meet with my consultant. Best wishes.
Hi! I'm on the max dose of Entresto and between each dose change felt the same, but it settled after about 2 weeks each time all the best!
I'm on Entresto middle dose and it's literally changed my life..I feel I can breathe again. Stick with it there are always minor side effects but it's benefits are great. I'm always a bit tired but I'd rather that than the breathlessness x
My partner was moved from Ramipril to Entresto about 4 months after his heart attack. He had been making very slow but steady progress, and they had upped the Ramipril dose a couple of times. Then the Entresto started, and he seemed to slip back for a few weeks - very tired, low BP, a bit 'wobbly' in the mornings. I was very worried (and a bit displeased at the cardiologist tbh), but then I checked out other comments on this site, which I found very reassuring. After about 4 weeks, the weird symptoms lessened, and he is doing much better now. Some days he even has systolic BP over 100, which was unheard of in the early days. The body seems to take a wee while to get used to Entresto but be patient and listen to your body. Rest if you feel tired, don't get up too early and just look after you. The symptoms will go away, and you will start to feel much better. My only gripe is that if this is such a well-known 'thing' about Entresto, why don't they warn the patient.......?
I had these issues when starting Entresto 40/51 in December 23, I spoke with my cardiologist and he said to persevere and it would get better. It took about 2 weeks and then I felt fine. My EF was 35% at that time in December 24 it was 48% so it was worth suffering the initial issues. I hope that it becomes the same for you best of luck.
Hi I’ve been on Entresto for 7 years. I could only tolerate 1 twice a day which I was started on. I then was put on 2 twice a day but felt dizzy and tired I couldn’t cope so I was put back on the lower dose. My EF went from 10% to 23% along with all the heart failure meds.
It can take weeks / months until your body adjusts to Entresto. My EF improved by 30 points under Entresto. This took 9 months. A week is nothing.
That's a good result! I had my last echo a few weeks ago and I have an appointment this evening to find out my results from the echocardiogram and my angiogram.
My last reading was 31% up from 13%, so I'm hoping to have improved on that.
I've been on Entresto for about 3 1/2 years, it drops your blood pressure and as others have said it takes a few weeks for your system to adjust. It's a good medication and has been a game changer for many so hang in there, it will be worth it
I have been taking Entresto 49/51 for three years now. Being 72 years old I can't say whether the occasional tiredness if from the medication or just part of the aging process. I also get a bit light headed when I stand too quickly, because of a drop in BP, I assume. However my EF has slowly improved from 30% to 45% after 6 months on Entresto to 60% after one year, where it remains now at three years on the medication. The drug does what it is supposed to do for many of us taking it. To me, the side effects are a small price to pay for the improved heart function.
Hi All, thanks so much for your quick and informative, encouraging and helpful comments. I have got blood tests next week and am seeing HF Cardio Nurse early February, so hopefully I’ll have a clearer idea then of how things are progressing. Many thanks to you all and take care of yourselves. Regards WBAS
healthunlocked.com/bhf/post...
I wrote the post above. How much do you take? It takes time to adapt but I have found ig to work wonders! My best wishes to you.
Give it time. I've been on the max dose for more than a year and feel great in spite of the HF. 😀PS here in the US it costs me $$$ - worth every cent. Best wishes.