My Dr wants to switch me to a new medication - Entresto

Posted by momma78 @momma78, Apr 15, 2016

My question is... my Dr wants to switch me to a new medication called Entresto....I am wondering if anyone out there has tried it yet...and what your opinion is of it...any side effects, that personally effected you? Likes / Dislikes...if any??? (I currently take Carvedilol, Lorsartan, Lasix, Pravastin, Eliquis) THANKS
My diagnosis: 37 yrs old - Familial Cardiomyopathy - my EF% have bounced around alot (18-34%), hence I have a ICD - Meditronic Biventrical Defibrulator.

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@denisern

I am have CHF, Cardiomyopathy, and LBBB , I currently take Faxiga, and Metropolo 75mg, I could not tolerate 100mg, I had an echo, with EF the same at 40% and I actually did a little worse on the treadmill, we are trying a 2nd trial of Entrest with 1/2 of the lowest dose twice a day, since starting I am breathless with very little activity and so fatigued, I feel very different than before Entresto, the Dr is talking about a possible pacemaker even though my EF is 40% but we trying meds first, she wants an hemodymanic treadmill test to check the blood flow in my heart when the LBBB is present when my heart rate goes above 100. I talked to the cardio nurse today and I am just so frustrated! Anyone have any experience with this?

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@denisern I had almost the same experience. Entresto was the first med tried but after 10 days it was stopped and put on Lisenphril and soon took me off of that. Now, I am on Amiodarone with side effects also. Like you, I am breathless with very little activity and fatigued. I do not get much done around the house but laundry. We eat out two meals a day. I am frustrated like you yet the meds I take lower my already low BP which does not help. Also, I am dizzy and my balance is not so great. Hope you do not have all the side effects I do. I try to do a little more each day but sometimes this is hard. I hope you find some answers that will help. Please keep me informed of your progress. KLH

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@kilh

@denisern I had almost the same experience. Entresto was the first med tried but after 10 days it was stopped and put on Lisenphril and soon took me off of that. Now, I am on Amiodarone with side effects also. Like you, I am breathless with very little activity and fatigued. I do not get much done around the house but laundry. We eat out two meals a day. I am frustrated like you yet the meds I take lower my already low BP which does not help. Also, I am dizzy and my balance is not so great. Hope you do not have all the side effects I do. I try to do a little more each day but sometimes this is hard. I hope you find some answers that will help. Please keep me informed of your progress. KLH

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@KLH that sound just like what I am going through! So frustrating because before we started this 2nd trail I was walking an average of 7,000 steps a day, now I can hardly get out the door, I talked to my HF nurse and she ha not gotten back to me but said to take just 1/2 of the lowest dose until she talks to the Dr and that we would probably abandon the Entresto again, my Cardiologist does want me on Spirolactone if we quit the Entresto, Thank you for letting me know I'm not the only one! By the way I have found a grocery delivery service with recipes that are easy & 20 min or less to fix, they are heart healthy & taste good! I also got a robot vacumm that helps keep my floors clean. Keep me up to date with how you are doing.

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@denisern

@KLH that sound just like what I am going through! So frustrating because before we started this 2nd trail I was walking an average of 7,000 steps a day, now I can hardly get out the door, I talked to my HF nurse and she ha not gotten back to me but said to take just 1/2 of the lowest dose until she talks to the Dr and that we would probably abandon the Entresto again, my Cardiologist does want me on Spirolactone if we quit the Entresto, Thank you for letting me know I'm not the only one! By the way I have found a grocery delivery service with recipes that are easy & 20 min or less to fix, they are heart healthy & taste good! I also got a robot vacumm that helps keep my floors clean. Keep me up to date with how you are doing.

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@densien Thanks for the reply Glad someone else is in the same boat with me. Although we really do not need in this boat at all. I still have another week to wait to see my PCP and then not certain whether I will get any answers. Keep me posted and you are in my thoughts. Stay as healthy as we can. Where did you find the recipes? I have not been to the store since Jan. 2022. Not much food in the house but canned goods and they may be expired. Some day soon I hope to sort things out. We live on the farm with cattle. I had a flock of sheep since 1978 but had to cut down and something had to go. So no chores for me. That is good right now. KLH

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I was recently put on Entresto. Entresto has been linked to rapid heart rate. I'm experiencing this now and have a lower tolerance for exercise. My Cardiologist wants me to stay on this nasty med because my ejection fraction is 30. I will continue to find safer and better ways to help my EF and tolerance for exercise. Weaning myself off from Entresto and already feeling better.

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@corjianne

Hello again, everyone,

After taking Entresto for 6 months, I just had another ECHO, which showed that my EF of 20 went down to 18. I also have no improvement in symptoms. I told my cardiologist I wanted to go off Entresto, but he insisted I stay on it. He said I might feel worse if I go off it.
Does anyone have any experience with this drug?
Thanks.
Corjianne

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I just went through the same thing with my cardiologist yesterday. I began weaning myself off entresto and against doctors orders and my breathing has already improved. My EF was 30 and I'm confident that it will improve with a healthy diet, supplements and exercise.

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@denisern

I am have CHF, Cardiomyopathy, and LBBB , I currently take Faxiga, and Metropolo 75mg, I could not tolerate 100mg, I had an echo, with EF the same at 40% and I actually did a little worse on the treadmill, we are trying a 2nd trial of Entrest with 1/2 of the lowest dose twice a day, since starting I am breathless with very little activity and so fatigued, I feel very different than before Entresto, the Dr is talking about a possible pacemaker even though my EF is 40% but we trying meds first, she wants an hemodymanic treadmill test to check the blood flow in my heart when the LBBB is present when my heart rate goes above 100. I talked to the cardio nurse today and I am just so frustrated! Anyone have any experience with this?

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I know how you feel because Entresto did the same thing to me.

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@kilh

@densien Thanks for the reply Glad someone else is in the same boat with me. Although we really do not need in this boat at all. I still have another week to wait to see my PCP and then not certain whether I will get any answers. Keep me posted and you are in my thoughts. Stay as healthy as we can. Where did you find the recipes? I have not been to the store since Jan. 2022. Not much food in the house but canned goods and they may be expired. Some day soon I hope to sort things out. We live on the farm with cattle. I had a flock of sheep since 1978 but had to cut down and something had to go. So no chores for me. That is good right now. KLH

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I just now saw this! have a delivery service called Hungryroot online. Livestock are alot of work! We have 4 backyard chickens & a Border Collie that wants to play fetch all the time. My husband planted a good size garden & it overwhelms me this year to think about harvest & canning/freezing!

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@88fingers

I just went through the same thing with my cardiologist yesterday. I began weaning myself off entresto and against doctors orders and my breathing has already improved. My EF was 30 and I'm confident that it will improve with a healthy diet, supplements and exercise.

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We have tried Entresto twice and I will refuse if asked to try a 3rd time, it was mentioned. I was constantly out of breath on 1/2 the lowest dose.

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@corjianne

Hi everyone,
I just wrote that I've been on Entresto for 4 weeks with no side effects. I may be mistaken, however, and I hope you can give me some insights. For a few weeks, I've noticed pain, especially in my arms and wrists. It's especially bad today. I wonder if it could be due to Entresto. Is there any way I can figure this out? A blood test, maybe? If the pain is from Entresto, I'm really going to be stuck, because it's bad and I'll have to choose between going off it when it might help or living with the pain. I'm in my early 70's and have had slight pains in my wrists for years, but not like this.

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I was started on the lowest dose of entresto and then my cardiologist doubled the dose a week later. I experienced similar aches and pains as you mentioned. I also had labored breathing. I came close to dialing 911 but called the on-call doctor instead. He alleged that there are no side effects like I was experiencing that are associated with entresto. lol. Entresto does seem to be of value to some patients but there are so many who will not take it. Be your own best advocate and always "hear your doctor but listen to your body." This is actually the name of a book that I'm working on. Metoprolol, a statin, is also good for some and not so much for others. If your medicines consist of taking both metoprolol and entresto, this can be a double whammy.

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Hi, I have been on Entresto for approx three years now with no side effects, and it is working wonders. I recommend it! Hope this helps.

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