Driving myself mad at the moment. Stupidly read lots of reviews on taking Entresto and have now started to worry.
Reviews were either very good, or worryingly bad. Some families commented it has actually caused death.
I'm due to start next Monday 16th and was really upbeat about starting. My cardiologist said it was a wonder drug for severe dilated cardiomyopathy now I'm scared.
I couldn't sleep last night worrying and wondering if I am doing the right thing. I haven't been offered any alternative.
I want to prolong my life not shorten it.
Am I overthinking?? I'm so scared now.
Your advice as always is very much appreciated.
L x
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I've been on entresto for over a year. I take 24/26mg as I can't tolerate the higher doses. I have severe DCM, this is one tablet I've not had no issues with. It has slightly improved the right side of my heart and my EF has gone from 10% to 15%. Starting new medication can me worrying and scary. Always take to your heart team as they will monitor you, and issues or concerns make sure you tell them. My medication is constantly changing. Try not to stress yourself out, I know that's easier said than done.Take care
Hi,I'm seeing heart failure nurse on 18th for the first time, I have a list of things to talk to her about. Im taking bisoprolol as well for ventricular tachycardia as,having ectopics throughout the day.
I wish I hadn't read all that stuff!
Having not had an opportunity to speak to anyone since being diagnosed, I'm feeling overwhelmed again.
No worries. It is overwhelming so you have every right to worry etc. That's normal. My heart failure nurse is awesome, I have her number so can ring or message at any point xx
Oh wow that's amazing. I hope mine is nice. I think I will see her regularly but not sure as to how it will work. I'm sure all will be explained. Just keeping everything crossed entresto works for me. Ef currently 32 so any improvement will be wonderful.
I don't want to get depressed and low. I feel like I'm always moaning and a burden to my family. My poor hubby can't do right for wrong and my kids on egg shells around me. My daughter is 17 and has refused to acknowledge I'm unwell and shuts down. Breaks my heart literally 💔 xx
The nurse will explain everything to you. It's hard on us and definitely hard on our families too. Once you have a plan in action etc, it gets a bit easier but don't be hard on yourself for bad days. Feel free to message or chat with me anytime x
I have been on entresto for 10 months with no issues except as someone else said a huge increase in my ejection fraction-from 25-55! Although I am other meds I have no doubt it was the entree to..and cardiac rehab! Prayers for you
Thank you for replying. I am my own worse enemy unfortunately. Lack of information hasn't helped and replying on Google not the right way to get reliable answers. Hearing from real people definitely helps.I so want to feel well and get some normality back in my life.
I have been told I will have an mri 6 weeks after starting entresto, so keeping everything crossed EF has risen.
No one overthinks and looks stuff up like me so I know where you are coming from!having no one who really understands makes it harder. But you will find the strength you need. I won't say relax a bit cause I still haven't! Be well
I think googling always makes things worse and remember even a paracetamol comes with a long list of issues. With my autoimmune diseases I was super sensitive to 5-6 and now on 7th however I worked on the basis one will work and yes they all had side effects but I wanted control back on my life and I needed a drug to do that!
So your cardiologist has explained a great drug and yes side effects but at some point you will need to start taking something.
I have been on Entresto for two years with no issues, except for a huge improvement in my EF, such that the cardiologist has discharged me. I just have 6-monthly blood tests to check my meds aren't doing harm.
All drugs can have harmful side-effects. There are plenty worse than Entresto.
Entresto was my first medication for heart failure. It tends to effect you in one of 2 ways: you take it without issue, or you develop a cough - which sometimes requires an alternate medication. But never heard of anyone dying or experiencing life threatening issues with it.
hi just to say Iv been on entresto 2 years I feel better I think your over stressing I’m sure the doctor knows best and please stop worrying it’s the worse thing you can do Godbless you and good luck kwagmire
I've only been on Entresto since December and have just moved on to the second dosage; so far, no problem. In fact, the main reason I was moved from Ramipril to Entresto is because I was having problems with breathlessness when doing very little physical exercise; climbing the stairs etc., In the few weeks I've been on Entresto I've noticed improvements already and am keen to move on to the highest dose in a couple of weeks time [subject to good blood test results]!
My advice to you is this: Get a notepad/create a Word document and note down any questions you need answering by your heart care team. Sometimes you'll find the answers on forums/websites like this and sometimes you'll get conflicting opinions. The evening before your appointment try and sort your questions into groups and then ask them of your heart care nurse. Don't be intimidated to ask. It's your health and you have every right to question everything that is causing you concern!
Hi. Sorry i have no advice about your medication but I do know how you are feeling about over thinking ( my heart failure is very new Christmas day ) im also being treated for cancer for the last 18 years where it kept comin back I made myself ill Googleing everything to the point I was thinkin omg .i even Google info from what I was looking at. it was painful but I needed to know and still want to know what medication I'm putting inside me .I was talking to my friend she said to me give me what you want to know then I will tell you what it says without going into every little detail. thank goodness for friends x please be careful looking things up x good luck with the tablets and appointment with your team xx
I’ve been on Entresto (highest dose) for over 12 months with Dilated Cardiomyopathy and I’ve gone from Severe Heart Failure to having an “almost normal” echo in November. This drug has done me wonders.
Everyone is different, but I doubt very much that your cardiologist is going to kill you with it. I was monitored very closely when starting any new drug. Suck it and see.
I was back in work 6 months after my cardiac arrest, Archie - that's when my sick pay ran out. Was I well enough to return? Probably not. Could I afford to stay off? Definitely not. Thankfully, I am relatively young and managed to muddle on through it. Still wouldn't say I'm back to pre-arrest levels (probably never will be) but the combination of prescription drugs and a slightly different role have certainly helped.
I have been on it for 20 months since the start of my Heart failure diagnose with a number of other medications included Forxiga another type of more recent Entresto drug.
It has made a huge difference to me.
All I can say is this, yes we are individual and all can have different experiences, however one thing which you should have in the front of your mind (I know it can be easier said than done) is that you are in excellent hands and the medics who are looking after you do have our best interests at heart.
Do mention how you feel as to what you have read to your heart failure nurse, as they should be able to give you confidence going forward. I would suggest you write your feelings/questions down before you go.
The reason i say this is that when I was told I had heart failure the consultant just disappeared from my hospital bed with no explanation. I thought i had days left, it was only when I spoke to one of the nurses on the ward (Nurse Emma) who told me about her heart problems that the cloud was lifted. I owe her a lot for that 2 minutes of conversation and she will never be forgotten.
Please don't believe anything just off Google. I've been on entresto for over a year and was also involved in trial which involved close monitoring. It definitely helped me. I'm on a cocktail of 5 heart med and yes I've got / get issues. Thinning hair , gut issues. I've adapted which is not always easy the best I can. My heart nurse was fantastic and even though I've now been discharged to GP care I know i can phone for advice if needs arise.
I will say my care since diagnosis April 2020 age 58 has been good ( I live midlothian edinburgh) and have been well monitored.
Try and stay strong and don't overthink everything. I don't have any support family wise apart from my 22 year old daughter. Focus on what works for you and adapt your life accordingly.
I can only echo What previous replies have indicated. When my cardiac specialist at Royal Papworth hospital Originally placed me on Entresto, he made it quite clear that this was a drug that had been researched and had a positive effect on improving heart conditions. After an initial reaction ofFeeling a little giddy, I had the morning dose reduced and took the higher dose at night. This seemed to do the trick and I’ve now been on this drug for two years with no problems. I’m due for a review by my cardiologist soon and will let you know the EF outcome.
Wishing you all the best and try not to Google too much as everybody circumstances are different. It all your concerns with your cardiologist.
For me Entresto has been the wonder drug that your cardiologist said. I'm on 97/103 tablet twice per day. I believe I would not be here but for it. I can understand your fears as I recently had a new drug added. Forxiga 10mg. I am now experiencing chest pain when I do any slight exertion. The HF nurses are great while you are in their care and your drugs are being titrated up. Once that job is done and you are discharged back to the cardiologist, it is difficult to get anyone to speak to, other than at your appointments. I wish you well and I hope you return to normal health.
you have had a lot of positive replies so hopefully this has helped you .I think how you progress without letting the anxiety ruin your life is due to the support you receive including this forum.
Every medication has side effects that are dangerous for a few.
Hopefully your support nurse will become the friend you need on the journey of recovery.
Good luck, confine your research otherwise it all drives you crazy.
I'm in the game but I say to my colleagues I'm a patient treat me as such therefore, I know that drugs have side effects but I believe my colleagues when they treat me. If you’re feeling anxious chat with the cardiology nurses. Drugs will improve your life with tweaks, I don't look for the negative effects I endeavour to be positive. Entresto has proved to be very effective 👌
like many other people on here I am happy to praise this wonderdrug. I’ve been on it for just over a year, dosage 49/51 and it has improved so much my life!
can I also add that we are so fortunate to be living in the U.K.? This drug is very expensive and I know in the US some people cannot even afford it! I think we should count our blessings and be happy that our cardiologists can prescribe it to us. Of course it is important to listen to your body and make sure you tolerate it and make sure your kidneys and liver functions get checked regularly but that’s about it for me.
Can I ask you where you read about death because of taking Entresto and what kind of death was it? Not worried but I’m curious now..
I started on it November along with 12.5mg eplerenone low does for 1month then 25mg eplerenone & middle dose in Dec, appointment 18th to possibly increase to max dose. So far so good. Can go abit dizzy if I get up quickly
Hi, I understand your feelings of worry re starting Entresto. I can only speak from personal experience and I feel much better. They started me on the lower dose twice daily. 10 days on I have moved to the middle dose. If I can tolerate this I move to optimal dose, (depending on bloods). Don’t worry, they will monitor you. I have a dip in the afternoon and when I take it at tea time I feel better. Very good drug for heart failure in my opinion. So they will start you in the low dose so don’t worry . Take care x
Hi, I have been taking entresto for over 5 years I take the 49/51 dose in the morning and the higher dose at night, I was struggling before I started taking it and can honestly say for me it is a wonder drug, my heart failure is now stable since using entresto, the only side effect I had was an itch all over my body but after reducing the morning dose from high to middle it settled down, I also take antihistamines to help as well, hope this helps
Hi my husband takes Entresto 24/26 the results have been fantastic, EF from 44 to 61, symptoms much improved. Trust in your medical team, ask them as many questions as you have, steer away from ill informed sites. I’d strongly recommend literature and support from the BHF and Cardiomyopathy UK, there’s a lot of help for other family members because they need information and support too, and it’s often better to get information:support from others too. Our children 25 and 26 have tried to wrap my husband in cotton wool !, it’s hard for the whole family. I know it’s hard but don’t overthink things be as positive as you can. Xx
I have been on Entresco for almost a year, no probs. Started on low dose, now on 97/103 mg with the help of my specialist nurse the dose was increased. Cardiology happy with my ICD and my heart. Do not worry.
I have been on Entresto for over a year and have just had the dose increased without any side effects. I am sure the nurse will put your mind at rest and ease your concerns about this medication and any other medication you may be on. Also a professional to ask is your pharmacist who will be able to put your mind at rest. The British Heart Foundation provide a freephone number 0300 330 3311 and there you can speak to a cardio nurse.
When I knew I was having my pacemaker and aortic valve fitted my mind was racing with a lot of negative thoughts, been able to speak to someone who has been through the same experience or a professional is a great help.
I wish you all the best and hope the comments help.
hi. I started taking the highest dose of entresto twice a day about 6 months ago. I’m also on dapagliflozin 10mg and spirolactone 25 mg. I was told by the heart failure team that this combination was excellent for heart failure. I only had mild heart failure to begin with but the cardiologist said there was evidence that entresto could have positive results. I was terrified when I found out that I had heart failure and was so depressed thinking of not being here for my family. I’m 51. I have a scan on 23/1 to see if my EF has improved from 46. I’ve had no side effects at all from entresto. It’s worth trying to see if it works for you. We all have different responses to medication but they wouldn’t risk putting you on entresto if they thought it would cause you serious harm. Good luck. X
hi. Hope you are well. I had an echo recently that put my EF at 45% but I also had a perfusion scan that said it was 53%. The cardiologist went with the perfusion scan and said everything looks good. So entresto appears to be working for me, I hope it’s working for you. I still don’t have many symptoms although I feel lethargic. I’m gutted that you have to go through this at 28 but at least you have age on your side which is a huge positive in terms of heart problems. X
Hi, I am 73 years old with Heart Failure first time answering anyone on this sight but I find it has helped me a lot reading other people's problems and solutions. I have been on Entresto for about two years after reading about it I was worried as well and said I would only take it if I was monitered regularly. It was take it or have an implant similar too a pacemaker. I can honestly say I have improved with no side effects and am now on full dose and EF has gone up from 25% to 40% If you have any queries or worries ring your cardiac nurse. I found mine was amazing and eased my mind about any queries I had. Good Luck with your treatment x
I have been on Entresto for about 8 MTHS... gradually the the dose was increased to the max 97/103 twice a day....all I can say is that I feel very well....my breathing ,stamina and general well being have improved greatly...if you can take it ,my advice would be go for it. Some people don't tolerate it well like all other drugs but if it works out it can make a big difference...good luck...try not overthink.I have been there too.
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