Anyone taking Entresto

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notvaporlocked
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Anyone taking Entresto

Post by notvaporlocked » June 11th, 2016, 11:34 am

Went and met my new cardiologist yesterday. She scheduled an angiogram to rule out plumbing issues and changed one of my main meds. Have been on Lisinopril for several years and since I have been having a lot of arrhythmia's of late she thinks a switch to Entresto may help. I think she looked at the Lisinopril and decided that wasn't expensive enough. She did give me 2 1/2 weeks of free samples to get me adequately hooked before I have to pony up my own money.

Anyone here have any experience with Entresto?

Terry
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May those who love us, love us. And those who don't love us - may God turn their hearts. And if He cannot turn their hearts, may he turn their ankles, so that we may know them by their limping. (From the movie, Keeping the Faith)

Medtronic Protecta XT (Second ICD), 3 leads (1 unhooked Fidelis) Sept 27, 2006, Feb 12, 2013

3 V-fib therapies. It works, I'm still here.

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ROBO Pop
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Re: Anyone taking Entresto

Post by ROBO Pop » June 11th, 2016, 3:03 pm

Terry. I took Entresto, manufactured by Novartis, when it first came on market about a year ago. It's the new miracle drug for Heart Failure patients. Course they don't tell you it's a miracle for only 20% of patients. As you know, you have to wean off any Ace Inhibitors before starting a Entresto regimen. I experienced cardiac edema, face and throat swelled and had to get off of it.

be aware it's pricey, you'll probably have to sell the herd to cover your costs. What you would sell for a second months dosage I've no clue.
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notvaporlocked
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Re: Anyone taking Entresto

Post by notvaporlocked » June 11th, 2016, 3:56 pm

Robo

Maybe I'm going into this with the wrong attitude but from what i have read on the net so far, I'm not real excited about it. It's still sitting on the counter and I have yet to let any of it out of the boxes they gave me. I didn't think about a search on here, I'm a little slow :duh:

Terry
Man Prayer
I'm a man.... But I can change.... If I have to.... I guess.

Red Green Show

Loving with all your heart is the only way to love somebody, Otherwise its not worth all the trouble!
Cary Grant

May those who love us, love us. And those who don't love us - may God turn their hearts. And if He cannot turn their hearts, may he turn their ankles, so that we may know them by their limping. (From the movie, Keeping the Faith)

Medtronic Protecta XT (Second ICD), 3 leads (1 unhooked Fidelis) Sept 27, 2006, Feb 12, 2013

3 V-fib therapies. It works, I'm still here.

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Ozchrissy
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Re: Anyone taking Entresto

Post by Ozchrissy » June 11th, 2016, 7:45 pm

Terry, I am in the same boat as you. My cardiologist wants to put me on it as well, but it has not been approved for subsidized funding yet and I am not prepared to go into bankruptcy over it. When Robo was on it I got a print out of the trial research that led to the approval for the drug and took it to my pharmacist to have a look at. She came back with the opinion that it was just a new drug that did the same thing as drugs I was already on. It just, in her opinion, put two into one. She also was critical of the research, not a lot of subjects etc. etc. Also our Pharmaceutical Benefits Scheme is pretty good in approving drugs that they believe will be of assistance to patients. The fact it has not been approved is an indication that they really do not believe it is superior to the drugs currently being used.

As a result of this I am not going onto the drug. If it does come onto our PBS and if it will not do me any harm, then I may give it a go, but until then I will plug away with the drugs I am currently on.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

notvaporlocked
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Re: Anyone taking Entresto

Post by notvaporlocked » June 11th, 2016, 8:30 pm

Like a moron I had failed to do a search here. I apologize and have gone back and caught up.

Sandy and I have decided even though I have a 2-1/2 week free supply that I will wait until after the angiogram and may even wait until I see the Electrophysiologist on the 29th. I got the feeling when I saw him May 20th that he had some idea about what may help me and he did not mention this stuff. Both the cardiologist and Electro guy are from the same practice so one of the challenges is to establish a pecking order so I don't get pulled in two directions. Now I just need to figure out how to pick the best pecker huhhh

Thank you for all.

Terry
Man Prayer
I'm a man.... But I can change.... If I have to.... I guess.

Red Green Show

Loving with all your heart is the only way to love somebody, Otherwise its not worth all the trouble!
Cary Grant

May those who love us, love us. And those who don't love us - may God turn their hearts. And if He cannot turn their hearts, may he turn their ankles, so that we may know them by their limping. (From the movie, Keeping the Faith)

Medtronic Protecta XT (Second ICD), 3 leads (1 unhooked Fidelis) Sept 27, 2006, Feb 12, 2013

3 V-fib therapies. It works, I'm still here.

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KansasAl
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Re: Anyone taking Entresto

Post by KansasAl » June 11th, 2016, 9:21 pm

Terry - You may find this interesting. Novartis has been in the news a fair amount recently—both for good and bad reasons. Starting with the good, the company’s heart failure drug Entresto has been hailed as a breakthrough that could help millions. The treatment is the first of a new class of drugs for heart failure, called angiotensin receptor neprilysin inhibitors. In a large clinical trial of over 8,000 people, patients who were treated with Entresto had a 20 percent reduction in risk of death or hospitalization compared to ACE inhibitors, the current gold standard of care.

My heart failure research nurse at Mid America Heart Institute told me awhile back that they are putting a lot of patients on Entresto and having good results. They are doubling the recommended time gap between stopping ARBs and ACEs before starting Entresto.

It is expensive if paying totally out of pocket, about 12.50 per day. Novartis does have assistance plans if you qualify.

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Ozchrissy
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Re: Anyone taking Entresto

Post by Ozchrissy » June 12th, 2016, 2:48 am

I have just had a bit of a look at what I can ascertain, and don't quote me and please do your own research, but it seems like Entresto is a combination of an Ace Inhibitor, which I believe most of us are on, and another drug which is a Neprilysin Inhibitor. Don't ask me what that is, but it is a type of med that I am definitely not on, and I was not able to find a drug that is manufactured, someone else may be more successful. Considering my cardiologist enthusiasm, and although my Pharmacist was not that impressed, I may just do my budget again and see if I can give it a go. I don't see my cardiologist until the middle of July, and will really get him to explain why he thinks it is so good, and then make my decision. Also Robo, they recommend a longer period of time now off the Ace Inhibitor before you start the treatment. Below is some research on the Neprilysin Inhibitor.

http://onlinelibrary.wiley.com/doi/10.1002/ejhf.250/pdf
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

garya
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Re: Anyone taking Entresto

Post by garya » June 12th, 2016, 10:24 am

Call me a cynic if you like, but it sounds to me like another case where they want you to be a paying test subject participant for this Entresto. There are people called among other things, medical sales reps. Their job is to go to doctors, explain the benefits of their new product, give them some samples, take them out golfing or to the Bahamas and have the doctors prescribe this new product to their patients. If some of the patients live, so much the better.

What is this Entresto going to do for YOU? I mean do you now have trouble walking a city block, but after taking Entresto for x months you will be able to run down a goat? What have you been promised results wise?

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KansasAl
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Re: Anyone taking Entresto

Post by KansasAl » June 12th, 2016, 11:20 am

Well garya, your definitely a cynic, maybe an azz. Out of curiosity, does your doctor promise you defined results for your drugs?

If you really want to know what Entresto does for your heart read this. http://www.entresto.com/info/how-entresto-works.jsp

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madison
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Re: Anyone taking Entresto

Post by madison » June 12th, 2016, 11:30 am

Terry wrote:Have been on Lisinopril for several years and since I have been having a lot of arrhythmia's of late she thinks a switch to Entresto may help.
What is a lot of arrhythmias? Aren't cardiologists more into plumbing while arrhythmias more the purview of the International Brotherhood of Electrical Workers? Can you spell ablation ;-) I kinda, sorta, maybe like Garya's approach of if it ain't broke, don't fix it especially with such a new and really expensive drug. Of course the last time that idea proved wrong for me I lost my virginity. And before the comments, that was a while ago.
At first I wondered why the frisbee was getting bigger and bigger .......... And then it hit me!

garya
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Re: Anyone taking Entresto

Post by garya » June 12th, 2016, 11:50 am

KansasAl wrote:Well garya, your definitely a cynic, maybe an azz. Out of curiosity, does your doctor promise you defined results for your drugs?

If you really want to know what Entresto does for your heart read this. http://www.entresto.com/info/how-entresto-works.jsp
AZZ? Is them fighen words? nononono What? You want me to read a Entresto PR release telling me what Entresto claims are the benefits of Entresto? Certainly some folks are having miraculous improvements at about the same time they are taking Entresto. But then some people have had their cancer cured just after watching the pope give a prayer. And then there are the lawyers that are on the telly each day telling me about the devastation caused by the new Pradaxa and the new Eliquis which will do great things in replacing warfarin. What part is true? Why don't I go to some politicians website and read what they are going to do for me? (that's ANY politician before someone's underwear gets wrapped around an axle)

I am not trying to troll this topic. My doctors do not promise me crap, but I make them tell me in detail what they expect to happen to me if I follow there expert medical advice. I am the one with my skin in the game, not them. If they are billing me $150 for like a 5 minute visit, they better realize I expect them to be right a lot more often than not.

---------
My apologies to KansasAl. After rereading the above it may sound like we're having a big argument. Hopefully it is only more a disagreement on perspective. Basically, what I've heard so far is a newly visited cardiologist and not an EP, has seen a lot of new arrythmias in Terry possibly electrically related and "thinks" starting the new and expensive Entresto will help. I am of the opinion that if me, I would like further review and consultation before committing. Your mileage may vary.

notvaporlocked
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Re: Anyone taking Entresto

Post by notvaporlocked » June 12th, 2016, 2:10 pm

I am pretty certain in the end I will have another ablation. I don't have a good history of being able to control severe arrhythmias with drugs. The visit to the cardiologist was primarily set up by the electrophysiologist as a introduction more than anything. Electro Dr guy seemed to have some idea after the EKG at my visit with him showed plainly what I had been dealing with. It was my first visit with him as well and rather than jump at something I think he wanted to get the Cardio Dr girl in the loop. But then before Cardio girl appointment, literally lightninghit got one of the shocks of my life.

At this point I am willing to do the angiogram to rule out a plumbing problem that Cardio girl can work on and wait to get back to Electro guy. I will be very surprised if there are any coronary artery issues. It just does't fit the symptoms and I have no family history and was clear 10 years ago the last time I had one.

I do have a loooooooooong history of bad electrical wiring. That all started around age 13 with SVT. I'm 63 now, pretty easy to do the math on that toungueee It has been 24 years since my ablation and I'm not dealing with any other serious medical issues, don't smoke rarely drink and not overweight or have diabetes or flat feet or terminal runny nose. Overall I look marvelous :D well maybe not exactly marvelous but one of the problems I have always had is I look normal. That may sound funny but because my SVT was hit and miss it was virtually impossible to have an episode that could be captured on an EKG or in the Dr's office. Dr would always say " we don't know how to fix it and you are leading an active life so, leave, go away I will deal with people that I can help".

Sorry got off track, back to the present time, Cardio girl didn't seem to know a lot about Entresto other than "It should make you feel better". She didn't know the dose, thought it was one a day and we had to point out to her the box said twice a day. How reassuring is that I ask you all? I took her samples and went on the way. On principle, not a fan of real expensive new miracle drugs that have no proven track record. I'd rather not be a drug experiment for someone.

I want to take this one thing at a time and do the Angiogram and then see Electro Dr guy before I start something. I am more inclined to take the advise from an Electro guy, they should know more about what makes me tick.

Terry
Man Prayer
I'm a man.... But I can change.... If I have to.... I guess.

Red Green Show

Loving with all your heart is the only way to love somebody, Otherwise its not worth all the trouble!
Cary Grant

May those who love us, love us. And those who don't love us - may God turn their hearts. And if He cannot turn their hearts, may he turn their ankles, so that we may know them by their limping. (From the movie, Keeping the Faith)

Medtronic Protecta XT (Second ICD), 3 leads (1 unhooked Fidelis) Sept 27, 2006, Feb 12, 2013

3 V-fib therapies. It works, I'm still here.

notvaporlocked
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Joined: January 14th, 2008, 10:52 am
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Re: Anyone taking Entresto

Post by notvaporlocked » June 12th, 2016, 2:27 pm

Madison ask "What is a lot of arrhythmias?"

Its pretty much every day now. Not all day but 3-4 hours a day at least. Almost continuous trigemeny, bigemeny Started getting worse 3-4 months ago with some every few days but has steadily gotten to the everyday thing now. It pretty much kills my momentum. The engine is running but doesn't have enough power to get out of first gear.

For those of you (Trucker Ron etal) who are familiar with diesel engines, power generated by me feels like a diesel with clogged fuel filters. moodbad

Terry
Man Prayer
I'm a man.... But I can change.... If I have to.... I guess.

Red Green Show

Loving with all your heart is the only way to love somebody, Otherwise its not worth all the trouble!
Cary Grant

May those who love us, love us. And those who don't love us - may God turn their hearts. And if He cannot turn their hearts, may he turn their ankles, so that we may know them by their limping. (From the movie, Keeping the Faith)

Medtronic Protecta XT (Second ICD), 3 leads (1 unhooked Fidelis) Sept 27, 2006, Feb 12, 2013

3 V-fib therapies. It works, I'm still here.

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ROBO Pop
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Re: Anyone taking Entresto

Post by ROBO Pop » June 13th, 2016, 1:11 pm

wait, wait, wait...let's back up a moment here. Your doctor recommended Entresto for a reason. Yeah it's new but has been fast tracked to help patients after what is considered a highly successful trial using more people than ever before. Many doctors consider this to be a game changer. My doctor prescribed it because I've run out of options and this drug can improve symptoms for final stage heart failure patients. Unfortunately, I couldn't take it due to an allergic reaction but I assure you I'd try it again were it not for that minor detail. It's supposed to work miracles for some people. Don't you owe it to Sandy to at least look into this further? FYI the manufacturer did convince my insurance to cover some of the cost so they try to help.

Just a thought, that and I hear your golf clubs are nothing more than some sticks with stone heads. golf2
Broken Heart
Nobody has ever survived life, but I'm trying...
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dick
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Re: Anyone taking Entresto

Post by dick » June 13th, 2016, 1:35 pm

@robo....you have stock in Novartis don't you?

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