Just been given a 'script from my cardiologist for Entresto. (24/26 Combo sacubitril & valsartan). Know I should trust them to only give me the best for me and seemingly this is a very good one......BUT...... Have you had bad side effects because to be honest I read the leaflet with them and got a bit of a scare with it especially as I am just coming to grips with all the meds I'm on anyway. Is anyone on them?
So really just looking for help and reassurance from others. Thank you all for your help🥰
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Velda1
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Hi Velda,My husband started on low dose entresto 6 weeks ago which was then upped to middle dose. He's tolerating it really well and says he feels so much better with more energy. He's 55 but feels 31 😂
He's also on Bisoprolol, Dapaglifozin, Spironolactone, Atorvastatin and Furosemide.
This is a man who has never taken any kind of prescription drugs! His HF diagnosis came out of the blue.
Since upping the dose he has been itching all over for a few hours after taking it but HF nurse says it's not a serious side effect and will pass.
I was also started on this in December and have loads more energy and vigour (although that could be down to the more regular exercise etc) so I am happy with it. Interesting you mentioned the itching, I got that too but didn't make the connection but it seems to be ok now.
I am on the highest dose of Entresto and started on the lowest dose almost two years ago. At each dose increase I had two weeks of nausea, dizziness and fatigue that then eased. My EF has risen from 30 to 60 and I have been discharged from Cardiology although I will be taking the meds for life. I feel well and now realise how poorly I was two years ago.
I’m glad you’ve got a positive reply, Velda. The problem (as I see it) with asking for this information here is this.
Suppose there are one thousand people on this medication of whom ninety percent get on well with the medication. Suppose of the ten percent left, just one of them reads this post and then replies to you. You would then be very worried about taking it even though prescribed by professionals for your health.
I find it incredible that people blindly take medications because it’s been prescribed by a ‘professional’. Doesn’t anyone engage their brains and make an assessment of whether a particular drug despite it being touted as the next ‘wonder drug’ is right for them? I was actually bullied by two medical staff because of my refusal to continue to take Entresto. They tried every trick in the book to get me back on to it. I’m not easily intimidated and they went away with a flea in their ears. The next thing I knew was that I was discharged from the cardio nurses care into my GP’s care. My GP has zero knowledge of cardiac issues. This feels like punishment for not complying. These are new drugs on the market yet they want us all to be on them? Do you know who did the medical trials for these drugs? The same companies who manufactured the drugs! Ummm duh! There’s a reason they want us all on these drugs: we’re Guinea pigs! I am not and never will be a Guinea pig.
I absolutely agree with you. My husband is on them has been for 2 years at first he felt ok but is now on the highest dose. I have tried researching this drug but can find very little which annoys me apart from one paper written at its start which said that Dementia could be a risk. He continues to take it as his case is very complicated and refuses to query it even though I’ve tried telling him to talk to someone. I’m sorry you’ve been referred back to your GP and I hope all goes well for you. No one researches anything now they just take it as gospel that it’s safe and effective if you get my drift?
I did research but like you came to nothing. I’m taking it because of the feedback I’ve had in here and another heart site. I’d rather have a good quality than none of life. Fingers crossed. Also it’s been around for nearly 10 years so..
The people who do medical trials are the pharmaceutical companies. That’s not to say that they are unsupervised. They have to make a profit otherwise they would not exist. Then we wouldn’t have any drugs.
More research. Above board trials. The trials for Entresto were stopped halfway through because incredibly (and I’m being sarcastic) it was decided that the results were so. ‘amazing’ that they didn’t feel the need to carry on. Hmmm…
I thought that was dapagliflozin! but there was nothing sinister about the trial being shortened. Dapagliflozin had been used for some considerable time as a diabetes med but it was noted that it really helped those who also had HF. It was then trialled for HF but because it had already shown to be effective & because the trial did confirm it to be incredibly effective I believe it was decided to license it for HF sooner rather than later. My husband is on Entresto, would you provide the source that says the trial for Entresto was stopped halfway through. Thank you.
I found this and there is others . I think for me, the quality I hope it can bring me (🤞🤞🤞) is worth it and that I am not going to get any of the side effects. I am willing to try. I dont do it blindly. I like to know what is going my body and what it can do. Life is precious as we all know and I want to carry on ema.europa.eu/en/documents/...
I was diagnosed with heart failure in July 2023 and have just recently been prescribed Entresto (24/26). I was of course very much like yourself concerned having read about the side effects of this medication. Thankfully after 3 weeks of taking this alongside my other medication I have not encountered any of the said side effects, except the tiredness issue which I know we all naturally tend to have to live with.
So please be reassured that there is nothing to worry about as it is one of the best medication out there and has huge medical advantages.
I'm on Entresto 97/103. It has been the wonder drug that gave me a life. I'm on it for 5 years and in that time my LV has increased from 42% to54%. I have not had any side effects or negative response to it. Hope this helps. Best wishes for your treatment and this new life.
I'm on Entresto, along with many others, and apart from getting shaky hands, which I'm assuming is from Amiodarone, I've had no effects from Entresto. Maybe I'm lucky. Giant68
Entresto by my regular dr because of high bp ....my echocardiogram says my ejection fraction is 56 which is not heart failure...then my cardiologist finds my bp at 157/60 says oh thats too high so he writes a new prescrip for it at the highest dose !! I dont take the whole pill i break some off but always end upwith more than half i take twice a day ....bp is still higher on top but bottom number is 60 62 ..i also take 6 mg coreg its changed my angina episodes and the frequency plus the strenth of the angina
regret to say they didn't suit me. They sent my blood pressure tumbling down to 90/62 and my legs were like jelly. Spoke to my Cardiology nurse who said that was fine. She also said to let her know if I felt dizzy and fell over. I told her I was 70 years of age with a replacement hip and osteoporosis. Needless to say I stopped them.
Well done to you for listening to your own body. Far too many of us are told to ‘battle through’ the side effects. I, personally, don’t think that is the best idea.
Hi, The number of heart pills I have tried is unbelievable, I have not tried the Entresto jet, but I was put on Bisaprolol and was ill for over a month which I had to get my doctor involve and he change the medication to Atenalol which suits me best, but half of my hair has fall out because of it.
Well the cardio nurses at the hospital are telling me I need to come off the Atenalol as it's and old drug and it's not a good pill to take.
I suffer with IBS and every single pill I have taken has given me sickness and diarrhea for over a month.
I started the Dapagliflozing 3 months ago now and was on a 10mg and within days a was ill again, so I went back to my GP and told him that I was not going to take any more pills and he reduced the Dapaglifloxin to 5mg which touch wood i have been alright taking it, but the hospital are not very happy and want to increase it and add more pills to the 2, I am taking. to tell you the truth I am one of those that I hate pills!
Not so good for you, I do have a bit of a chesty cough but so far that seems to be all Take care, we are lucky we live in UK and dont pay for med its free but (we do through national insurance contributions)
Hi, I’m on the middle dose of Entresto, which I tolerate well with no side effects. My EV rate is 43% and stable. I couldn’t tolerate the higher level as it reduced my blood pressure too low and I felt nauseous and very tired. I believe it’s the best heart drug on the market, if you find the right level.
I am now on the middle dose, took me a while to get used to it - fatigue was the main problem. Now feeling good and EF much improved. As Sir Humphrey might say not taking it is ‘a brave decision’.
I was on the middle dose for a couple of years with no probs and EF improved from 30-35 to 35-40. Then put on high (97/103) dose and after 6 months my systolic came down to to the 90s. So, GP put me back on middle dose for a while and now moved back onto higher dose again after systolic had risen. Feel good + no other side effects.
For me (67 year old regular gym goer and cyclist, with very low natural heart rate), it's been an interesting one. Started on the lowest dose (the one you've been prescribed), immediately after unexpected aortic valve replacement in April 2023.Moved to middle dose in June, but BP came down rather too low, so that I was experiencing impacts from that (mainly migraine like visual issues). As a result I never moved to the top level dose. In December my EF was back to normal (was 28% just before the op), and the cardio was happy to drop me back to the lower dose again, since when the visual issues have disappeared, although the BP low number is still a bit down.
Overall I'd say if you do experience any side effects it comes down to whether you're happy to deal with those, as opposed to perhaps missing out on the (likely) beneficial impacts on your heart if you do take them.
I have been on Entresto for nearly 4 years, and I used to get low blood pressure. I was on the lowest dose and gradually increased to the highest one. I feel fine and we are lucky to be on Entresto as not everyone is prescribed this drug.
I think this drug is amazing. I feel for me it’s a life saver. I started on the lower dose and didn’t read the side effects because I knew I needed it. I’m now on maximum dose. It’s like a pep pill for me. I generally slump in the afternoon and when I take it again at tea time I get extra strength. It can lower BP so be aware of that but the benefits definitely out way the side effects for me. My ejection fraction has improved too. Hope this helps.
Hi I've been on Entresto the highest dose for eight years now and have never suffered any side effects. Trust your cardiologist and don't worry. All the best.
⁹I take Entresto. Started small dose, then dose increased. Don't have any side effects as yet. Hopefully this continues as I feel great. Going to cardiac nurse next week and hopefully get the results of my heart mri. Keep having bloods taken to see if my body is tolerating higher dose.
This is all new to me too but if the drugs help I am certainly taking them.
I'm on that dose of Entresto and had no side effects. It's a wonder drug - don't worry about the tiny possibility of a side effect, enjoy the benefits.
Husband is on mid dose of Entresto and I’d dread to think where he’d be without it. His ejection fraction has gone from 14% to 32% and he’s able to live a mostly normal life without symptoms of HF or side effects. He had been on ramipril before which made him feel lousy and affected his taste buds but nothing negative with Entresto and it’s been over a year.
Been on Entresto for 3 years in various doses, the only side effects have been low BP but apart from that no other issues. I was on the middle dose but a hospital admission put me back on the low dose. Will be seeing my heart nurse to increase back to middle dose. It's a very effective heart medicine and my EF has increased to 50% HTH
I have been on entresto for 2 years...they gradually increased the dose to what I believe is the maximum97/103 mg.....all I can say is that I didn't get any side effects...so perhaps I am lucky... It has made a huge difference to me...from really struggling to walk any distance,I have no problem going a 40 mins normal pace walk ....it is definitely worth a try.
I can only speak from my experience but I've had no side effects at all..not one. For me it's been a game changer as I can now breath better and my chest feels more open and clear. I can do more without stopping. I am now on the middle dose as was upped from the lower dose after about a year and it's only been good for me.
Husband has been on it for years. Less side effects than ramipril for him. Sadly he hasn't seen the improvement in EF many others have but it gives great results for many. Good luck 👍
hi Velda1, yes I’ve been on exactly the same for over a year now and I’ve been ok I take 1 in the morning with other tablets and 2 in the evening. I’m sure you will be ok. X
Hi Velda I have been on Enstresto nearly a year now started on the low dose and now on the middle dose as my blood pressure would not tolerate the high dose. To begin with used to jumping up from sitting which I found I could not do I went dizzy and like others itching which I can still get on and off just had echo gram for my metal valves so waiting to see my Cardiologist for results fingers crossed my EF has improved also. My energy also increased nothing to loose if it does not suite you you can always stop taking it. As Tantan says it is classed as the new superdrug for HF (hate the terminology hence abbreviation!!) expensive I believe
Hi. Hope its going well for you. I started entresto 3 days ago 41/59. OK so far but early days. Lots of positive comments so we need to give it a good try.
My husband was put on full dose of entresto february 2023. He was not monitored and within 6 weeks was breathless lost energy. He was convinced it wasn't entresto I contacted the heart failure nurse who said it definitely wasn't the entresto. He has improved a little in the last few weeks so I am hoping that he is adjusting to it. What I am trying to say veldt 1 that although I believe he had very negative reactions to entresto, his body has adjusted. Also, he is very much in the minority if it was a reaction. I hope all is good with you.
I really don’t think your husband was in the minority. There are bad reports on these drugs from patients (or their carers) that you can search for online.
I am on the same dose.of Entresto...but only can take a half due to low BP..I also take a half of Bisoprolol 2.5..so 1.25 mg...I have tried to up dosage but BP drops too much..even with these low doses my EF has improved from 37 to 49 in 18 months..no side effects at this dosage...my HF also came out of the blue...and have been diagnosed with.LBBB since 18 months..initially I could not imagine why and was very worried..The words HF is a difficult diagnosis to swallow..now I know we can live with it..a pretty normal life..I keep a daily record of my BP..taken twice a day to take to Cardio twice a year...listen to your body too...everyone does not tolerate the same meds or the same doses..best of luck to you.
Yes, I'm on Entresto as well as all the other "Good" stuff. I moved from Ramipril and was on the top dose of Entresto very quickly. No side effects from any of my meds that I am aware of. Entresto is an expensive medication and really is the best out there at the moment for HF. People can tolerate different doses so they will try you at each dose to see what you can cope with.Good luck.
Hi Due to the severity of my heart failure at 49. 9days my starting dose was 49mg/51mg and thankfully I had no side effects at all. I am now on top dose 97mg/103mg and still no side effects. I tried not to read the possible side effects as I feel even if you are not going to get them psychologically I may suffer from them. I read the side effects if I feel unwell to check I'd I am suffering the side effects or something else.
I am now 5 months on an still not feeling any side effects.
I've been on the highest dose for about 5 months, my only medication. A real game changer, well worth the £500 per month it costs me here in the USA. I've had the persistent cough side effect but otherwise nothing I've noticed. I hope it works for you Velda, as well as it has for me and for most of the other posters.
I take Entresto and managed to get on the highest dose three weeks ago. I have been on the middle dose and 3/4 dose since December. My experience is that with every increase, there were side effects for some days or even weeks, but I managed to cope for this short period of time, and it was worth it.
Side effects I had: Vomiting (started after the first ever Entresto tablet, lasted 48 hours), sudden dizziness (with every increase, longest period was 2 weeks), and I also had a dizziness-related fall after I reached the highest dose. All side effects are gone now, and I feel very good. Entresto is such an important medication that I think it's worth battling through the first 2 weeks or so.
My experience with Entresto has been entirely positive. Like you, I started on the lowest (of 3) dose, but I am now on the highest dose, which is 4 x more. My HF nurse introduced me gradually, upping the dose only when there were no adverse side-effects - luckily I had none. It would be no exaggeration to describe Entresto as a `miracle drug' if my experience is typical. I feel so much better in every way than I was before, and am so grateful to now be living a near normal life.
Hi - I was diagnosed with heart failure in September and have been taking Entresto since around October. I was a bit spooked by the list of side effects as well but in reality I have not had any problems at all and I am now on the the mid level dose of 49/51
I had a nightmare of a time on both Entresto and Dapagliflozin (I wasn’t taking them at the same time). I felt extremely unwell on both of these medications and it was so severe that I stopped using them within a week each time. My symptoms were:
Generally feeling awful.
Swelling of both ankles
Increasing redness on lower left leg (with clear weeping).
Body Itching at night
Pain in right lower back
Pain in upper abdomen
Increased fatigue
Sleeping a lot
Brain fog
It scared me so much that I vowed never to use them again. My body was telling me something and I wasn’t about to ignore it (I’ve stupidly done that before and it didn’t work out too well). It was definitely these drugs because I was doing fine until I was ‘persuaded’ (read bullied) to take them. Doctors don’t know everything. And that’s what Big Pharma rely on. Make your own decisions, your health/life may depend upon it.
No problems at all. I started on a low dose , which was then increased to the full dose after 6/8 weeks. The drug (plus the others for dilated cardiomyopathy() have restored me to a functional state. Plus a CRT-P pacemaker of course Lost a lot of fitness and now trying to claw my way back to where I was.
Looking back my recovery is quite miraculous courtesy of drugs and pacemaker. One day I was looking out the garden window and realised I felt normal again...bliss!
This has been a really interesting post and timely for me. Next week I am going to the Entresto clinic for the first time. It will replace Lisinopril. I was wondering what to expect. I am also on Bisoprolol and Spironolactone and Dapagliflozin and Apixaban.
After reading this I am really heartened by the positive responses. There are inevitably some negative ones. Some people who've had negative experiences just don't trust doctors and "Big Pharma". Fair enough - each to their own. But the positive responses have made me feel a lot better. However I am wondering about taking a planned holiday 2 weeks after starting Entresto. I'll have to raise that at clinic. It's a flexible ticket and we're only going to our own house so it's easy to change it.
I had a diagnosis of HF out of the blue, although i guess I was a candidate. My mother had it and died too young. She had very little medical treatment so can't blame Big Pharma for that. Plus I have had AF for many years, 2 ablations and then a pacemaker for bradycardia. Pacemaker dissynchrony caused the heart failure, they say. So I had a biventricular pacemaker fitted in October.
Hi Coco51Just wondering how you got on on that combination of drugs?
My husband was put on these too. Entresto, Dapaglifozin, Spironolactone and Bisoprolol in January.
2 weeks ago he started vomiting, no appetite, losing weight.
He went to Emergency department and his kidney function had dropped from 90 to 29! He was in kidney failure from the amount of medication. He has just spent 3 days on a non stop drip.
Emergency Dr was really not happy with the amount of meds that the HF team had dished out and accused them of going all gung ho on meds for the heart that can damage the rest of the body.
He is now only on Entresto and Bisoprolol.
Please be careful and listen to your body. If you start feeling nauseous or losing appetite go and get a blood test.
Thank you for the warning. In fact I have been getting along fine. My last echo showed EF up from 30% to 50%. So HF specialist said no need for Entresto for now. Been on the lisinopril for about 30 years. On Bisoprolol and Apixaban for 8 years. Dapagliflozin and low dose Spironolactone for 5 months. My last 3 monthly blood test was early March. Kidney function was down a bit but still in normal range (75 I think). I.e above 60. So I will keep an extra watchful eye. Thanks again and good luck to your husband ❤️
Is your husband feeling better? I forgot to say I think the bigger pacemaker has done most of the heavy lifting for me , so thanks to your warning, I have googled around reputable sites and after what I've read, I will definitely ask about reducing the meds next appointment if heart continues to improve🤞🤞🤞
Hi, yes he has been discharged. His kidney function improved after stopping the medication and being rehydrated. They think the main culprit was having dapaglifozin mixed with other fluid removing meds. He doesn't have a pacemaker. His echocardiogram in January showed 30-35,% ef but the MRI said 21%.
He has the appointment with the cardiologist in July so until then 🙏🏻🤞🏻
For me it's felt like a miracle drug. My EF has gone from 20 to 54 and my left ventricle has gone back to normal size. I do get the odd day when blood pressure gets low but it's a small price to pay for the improvements. Dr says I'm doing well enough to ski this year. Hope all goes well.
Hi Velda, I had a triple heart bypass in November 2022 and have been on a combination of different medications since then. I am now taking Lansoprazole, Entresto 97/103, Apixaban, Spironolactone, Bisoprolol, Dapagliflozin, Allopurinol and Atorvastatin. The cardiology people have explained that it is all a bit of a balancing act until everything settles down and you get used to the meds. I started on Entresto 24/26 but felt a bit light headed and almost dizzy at times. I was then put on Entresto 49/51 and again at first I felt a bit light headed and dizzy at times. I was then put on Entresto 97/103 (highest dose) and again at first I felt a bit light headed and dizzy at times. However, several months on and I now feel ok on the highest dose of Entresto. I can only say, from my experience, try sand stick with hte meds and hopefully your body will get used to them. I would add that it is advisable to keep the doctors and nurses aware of your side effects so they can help if possible.
Hi,I've been on entresto now for a couple of years with no problems at all ,even with the other meds im on. Entresto is meant ,I believe, to be a 'wonder' drug in the treatment of heart failure with reduced EJ.
Entresto is a GREAT way to clear the bowels, often with no warning.....so be careful. ANY feeling that you`ve got wind get to the loo, else.......!!!!!
I had it changed to Amiodorone. Remember, every damn tablet you take has side-effects; Read the bloody leaflet and listen to your body.
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