Entresto

[bhfels]

I have DCM and an EF of 36 although it was at 34 at one point and I felt terrible. However at 36 I can have a normal reasonably active life, 18 holes of golf , no problem

However to further help my heart my cardiologist decided to double my dose of ramipiral from 2.5 to 5mg. It had the exact opposite effect, I had appalling headaches , migraines and then palpitations to the point where my GP sent me to A&E who promptly went back to the minimum dose. Now I'm about to discover Entresto.

My blood pressure is low to normal with a slightly impaired kidney function and I'd like to know other peoples experiences of Entresto if possible before I make a decision about taking the drug . As you can imagine the fact i'm even posting at all means I'm having second thoughts already. I'm a short woman so I;m not sure about being given the same dose of the drug that you'd give a 6ft man.

I'm also edgy about the drug as there's a theoretical risk or Alzheimer's that's still being tested, I'm not keen on being a drug companies lab rat and I have relatives that have had dementia although not all of them.

All in all a major stress out which I suspect is not doing my heart any favours at all.

Has anyone had any positive or negative experiences with the drug?

Thanks

[P0rtnahapp1e]

Hi bhfels , I’ve been on Entresto for six months. I was started on the lowest dose of 24 mg, as is a common practice I believe to monitor each persons reaction to it, then increased to 48mg before going on to the full dosage.

I frequently have low blood pressure which is a contraindication for Entresto so when I was stepped up to the second dosage my heart failure nurse got very fidgety and rang me occasionally to see how I was. During this time I jumped up quickly for some reason and got slightly light headed so my overcautious nurse told me to cut back to the original dose. This instruction was reversed a few weeks later by my cardiologist who says that the full efficacy of the drug is not displayed at the lowest dose. She was quite right. I’ve been able to cut down on my furosemide, I feel so much fitter, am not so breathless, and am almost back to my old self. Can’t wait to get to the highest dose.

I’ve been in contact with a man in Maine, USA, who has been taking it for a year and he says they go straight onto the highest dose without the cautious steps that we in the UK take.

Do a search on the top right of the page for Entresto and get some other reactions. We are all different and there are some perhaps who have different reactions, as with any drugs.

We certainly aren’t guinea pigs. It’s NICE approved and licenced.

Good luck with it.

[bhfels in reply to P0rtnahapp1e]

Thanks for the input. I was very twitchy about the drug due to the theoretical risk of Alzheimer’s and some negative reviews so I took a DNA test which came back clear and decided to Go for it last week. Lowest dose.

No dizziness, swelling just some nausea upset bottom and decreased appetite. Plus I can’t look at alcohol so I’d have to say positive side effects exist.

Anyway after 1 week I feel as if someone has put a rocket up my ass. I manage 18 holes of golf despite my poor EF but I’d be wiped but I feel like I’d sail round now.

All this in a week ?