Profile picture for user shortstp78
Juanita P. Recipient

Entresto

Hello Everyone again, i have a Heartmate II for almost 3 years now.  Not a candidate for transplant, too healthy,, antibodies too high.  However, the Dr. wants to put on entresto and continue on coreg to possibly remodel the heart and bring up the EF.  There is more information, but no need to bore you.  Has anyone ever taken entresto with an LVAD and did it help with the Ejection Fraction?  

 

Juanita

Profile picture for user Shilma
Susan R.

My husband had a Heartmate ll and high antibodies, according to our doctors. After researching, we found that Cedars Sinai hospital in Los Angeles did not consider his antibodies an issue. 
He had a transplant there almost two years ago. 
If you can go there, I recommend it.

Profile picture for user shortstp78

In reply to by Susan R.

Juanita P.

Oh that is wonderful news!! Unfortunately my antibodies are 90 percent and have no way to go to California.  Have a home here and would lose it if I went anywhere... Thank you for that information though...I believe one of the hospitals here did mention Mt. Sinai hospital in CA....

Profile picture for user Scott M
Scott C.

I was placed on Entresto about 3 months ago.  My diuretics namely metalazone and toursemide were starting to cause problems with my kidneys.  The Entresto has effectively eliminated my need to take any diuretics.  So far so good. They cancelled my Kidney transplant consultation based on these improvements.   I am on the transplant list for my heart and have had my Heart Ware for just over one year now.  It HAS NOT reduced my EF at all and never thought it would given the condition of my heart as evidenced by my most recent Echo.  Oh and my provider is Johns Hopkins in Baltimore.

Profile picture for user shortstp78

In reply to by Scott C.

Juanita P.

Scott that is good news to hear that you are on the transplant list.   Hopefully, you will get one soon.  The Dr. did dc my diuretics as nt holding water at all.  I am on Valsartan as they don't want to take a chance with allergic to Entresto. They are checking kidneys in about a week.  If the medication causes any problems, or If having a tough time tolerating it.  I just go off. Enough said!!

Profile picture for user Anonymous
Anonymous

To me it is interesting to hear that entresto may bring up EF, did the doctor say it would. 

We got off entresto after the LVAD implant, don't really k ow why. Will have to ask.thanks for looking at this

Profile picture for user shortstp78

In reply to by Anonymous

Juanita P.

Gabriele, the Dr. I had few weeks ago was totally awesome!! He is a transplant Dr. and was filling in for my Dr. who was at a conference.  Lucky for me!! He was not only very thorough but after giving the news of antibodies, etc...he asked what I wanted??  i said  to have this device out....My EF now is about 15 which is higher than has been in l0 years...  I worked with a l0 EF for 10 years.  He advised i was not on the right medication..I was thrown.   He advised that research has proven entresto and sparenlacton - spelling that one wrong were the drugs to use.  Research has shown that pre-pump it did raise EF, however; post pump research has not been done with the drugs to report if there was a rise in the EF but was no different, same heart, same goal etc.  He said it is worth the shot, and in 6 months I will get another Echo to see if improved.  Why wouldn't it?? And it is worth every penny of a chance...See the way I see it, and have heard, and have experienced, most hospitals put the pump in and "that is what will do the work" with taking the basic meds, blood thinner, bp pill etc.  Does anyone really talk about working toward improving the heart making it stronger and possibly explanting the VAD?? Not a whole lot.  Not everyone is in the same box, i get that, but there are interventions that can be utilized in hope of improvement with strengthening of the heart.  As they asked me, what do you have to lose if it doesn't work?  You go off the drug!! Sounds pretty reasonable to me.  I hope that helps and I hope this helps. Already, I want to be honest.  The med I'm taking, Valsartan as I can't take entresto because allergic to the ACE inhibitors, and entresto is a combo of ACE mimic and ARB's I already feel better and only 3 days in.  Good luck and prayers for all of us..:) 

Profile picture for user Anonymous
Anonymous

Dear Juanita, thank you very ,much for your informative mail. That really helps, my husband also thinks, that one day he may get of the LVAD. 

We definitely will discuss this with our doctors.  We have  good doctors and f

 they listen to us and have given good advise and results when we addressed something.

I share your attitude and thoughts.

All the very best and much success for you. 

And a better echo next time to go.

Gabriele

Profile picture for user shortstp78

In reply to by Anonymous

Juanita P.

Thank you so much Gabriele and the same to your husband.  Tell him to hold tight, there is always a reason for the season.  

Profile picture for user Anonymous

In reply to by Juanita P.

Anonymous

Thank you, Juanita, we have to keep the Faith. Worries end, where Faith begins

Happy Thanksgiving 

Profile picture for user hind
Hind A.

Hello 

sorry to join so late

my father has taken entresto before the vad transplanted 

Since he took it he feels so weak and dizzy ,his blood pressure became too law while all the doctors from everywhere advised him to take it !! 
 

after that his doctor tells us rare of the patients cant tolerate this medication.. so baba stop it since that time 

 

but most of the patients improve with it according to them

 

get well soon and try all the way to be fine , 

Profile picture for user hind
Hind A.

My advice to you 

start with baby dose , I mean small dose 

and week by week try to increase the doses 

DONT start with high dose immediately 

and remember if u are taking one medication name ( lisinopril) you have to STOP it for 2 days before you start The Entersto , otherwise u will have some complications ​​​​​!! 
 

don’t take this 2 medication together at all

Profile picture for user Anonymous
Anonymous

Thank you, I appreciate all info, I believe the more info we have, the better we can weigh things and talk to our doctors.we have to be our own advocates .

Best wishes 

Gabriele

 

Profile picture for user rhardesty
Ronald H.

Good day, 

My son has the Heartmate III and is doing great, 3 months. Suggested Ernesto to assist in heart improvement.

Any good or bad reactions people have had. Very concerned about Kidney failure.

Please any comments well appreciated.

God bless all and always believe.

Profile picture for user rlouis1439
ron l.

Hi. I’d like to ask if you’re still on Entresto, how are you doing on it. This question is for anyone who wants to reply. Both my cardiologists from different teaching hospitals, one major, recommends Entresto saying that they’ve seen very good results over the years. Some have been on it since the early trials almost a decade ago. Cheers..

Profile picture for user mbenner55

In reply to by ron l.

Michael B.

I get my Entresto free from the Novartis Foundation. I had to have an income less than $75k and send tax forms. and have my cardiologist fill out partial provider section. You must reapply annually. Buy it's worth it.Michael B.
Profile picture for user drausch52

In reply to by ron l.

Douglas R.

After my Lvad, docs took me off entresto, which had been working fine.  My heart doc sent me to John Hopkins In Baltimore for evaluation.  They recommended I go back on entresto.  
It seem to be having good results.  Not sure why Washington Hospital Centre took me off.  

Profile picture for user shortstp78

In reply to by Douglas R.

Juanita P.

Hello Douglas,

I have a good idea why they wouldn't want good results.  However, so glad to hear your having positive results with entresto again.  I'm an LVAD, unhappy patient, for about 6 years now.  3/22 will be year 6.  At this point, all the hospital does is monitor coumadin.  I'm on a BABY DOSE OF CORGE.  But,,,,, the total cost of care in 2022, just received a summary from insurance was a Million and 32 dollars.  I wouldn't want entresto to work either.  But you keep plugging along and get healthy and strong.  Prayers for you.  

Profile picture for user rlouis1439

In reply to by Juanita P.

ron l.

I thought I had left a post today but must not have clicked Save. I have trouble using this format, but not complaining. Why did you say you weren’t prescribed Entresto and why? All the best.

Profile picture for user shortstp78

In reply to by ron l.

Juanita P.

Because the Dr's, prior to the LVAD as well, thought it would be a better medication to help the heart function and increase EF.  The sad part was, I'm allergic to ACE inhibitors, and they medical field advises that entresto has some ACE in this medication; therefore, I can't take it.  I did very well on Valsartan HCT, baby dose as well, but just need to talk to Dr's. to dc Corge.   Coreg, after six years now with LVAD, has done nothing to increase the EF.  In addition to the ICD that was implanted 11/4/16.  I was also informed would increase the EF.  As of the last echo, they claim same.  I haven't had an echo for year now and due for one, praying that it has increased.  IDK..

 

Juanita. 

Profile picture for user rlouis1439

In reply to by Juanita P.

ron l.

Unfortunate that you can’t take Entresto. From much of what I’ve read it can increase it. I wish you well!

Profile picture for user rlouis1439

In reply to by Juanita P.

ron l.

I’m also on Coreg. My ef increased a little being on it. Mainly was prescribed to reduce heart rate, to save the workload on the heart. On lowest dose of Entresto for about a month. Cheers.

Profile picture for user rlouis1439

In reply to by Douglas R.

ron l.

Douglas…..are you experiencing any side effects from Entresto. What are the good results you mention ? I’ve read that many have increased ejection fraction and studies report as much. My Cardiologist suggests that I start taking it. I’ve also read that some can’t tolerate it. I’m really apprehensive either way, - taking or not taking. Thank you for any information you might share. rl

Profile picture for user goodwench1000

In reply to by ron l.

Diane B.

Hi Ron  My husband got his Heartmate 3 in August of 2020. He has been back on Entresto since shortly after discharge home. Was also on Coreg prior to OR but because of low BP only tolerates smallest dose once a day. The Entresto seems to be fine with him. Hard to gauge the functional gain because he has severe back problems that prevent any degree of distance walking. He is able to use recumbant strider with no increase in symptoms. Hope this helps.  Diane

Profile picture for user rlouis1439

In reply to by Diane B.

ron l.

No increase in symptoms is a win as I’m sure you know. Thank you for your reply. All the best…ron

Profile picture for user rlouis1439

In reply to by Diane B.

ron l.

Has there been an increase in EF from the Entresto with the smaller dose? Thank you. 

Profile picture for user goodwench1000

In reply to by ron l.

Diane B.

Hi Ron  I do not think we could compare my husband's situation to many others. As a complication of his heart failure he developed almost constant AFib which he had SA node ablation for but not successful long term. He then had major L Ventricular arrythmia, had defibrillator installed and then required 21 hours of ventricular ablation in 3 different sessions and a lot of anti-arrythmia medications to this day. When they did VAD the surgeon removed a great deal of scar tissue. Hard to believe that he never had a heart attack at any time. His EF just prior to surgery was about 5%. It is 10 to 15 now but not sure if surgery or Entresto or both resulted in the increase.  I personally believe it helps but I cannot assure you of that. Try a small dose, see how you feel and then you and your MD can decide from there. Because my husband has pulmonary hypertension and takes medication for that we had to carefully balance those meds and the coreg and the entresto so he would not have low MAP and dizziness. Any doctor we have talked to thinks Entresto is very important for any stage of heart failure.  The decision obviously lies with you but take into consideration that all drugs have side effects and you need to weigh the benefits to you versus possible side effects.  Good Luck.  Diane

Profile picture for user rlouis1439

In reply to by Diane B.

ron l.

Hi Diane. I appreciate the thoroughness,  as I’m sure anyone interested in the subject does. As I have mentioned, my Cardiologist has patients who have been on it since the trials almost a decade ago. Have heard and read that some experience side effects and some only mild. As long as he is doing well is the measure. Again thanks. All the best…rl