Entresto. Ready to jump from middle to high dose?

[theonethatgotaway1]

I have been on entresto middle dose for a good 2 years now and my ef rate had originally bounced back from 12% up to 45% then it dropped back to around 30-35% where it stands today since the last scan. I did experience strong side effects on the middle dose for a good year until I got used to it. I don't recall seeing much improvement going from start dose to middle.

Symptoms of heart failure varying with chest pains/ache being daily at random times. Some ectopics. Etc.

I am wondering if anyone has experience from moving up from the middle dose to highest and did you notice improvements in your condition from this alone? Side effects?

I am yet to turn 40 and so trying to keep the engine chugging along for as long as possible.

[tonylongman]

Hi

Similar to you my EF was mid 30s having recovered over a couple of years post CA when it was very low.

Cardiologist suggested Entresto and I was under guidance of specialist nurse for about 6 months during which time they ramped the dose up in steps to the max (97/103), the only problem I had was the impact on blood pressure which on occasion would drop as low as 90:55 but which has eventually settled to about 100:70. (my blood pressure was never high in the first place). The positive news was my EF which went up and is now at 50. Cardiologist has mentioned several times that he now has access to other drugs which he will introduce if Entresto benefit starts to wane.

Suspect I have been lucky but at present I'm a big fan of Entresto so hope you benefit similiary when they increase your dose.

[theonethatgotaway1 in reply to tonylongman]

Brilliant. Yes the drug dropped my bp also but has settled to 100/70 on average now. I will speak to the cardiologist next time I see him.

[am1875 in reply to theonethatgotaway1]

My cardiologist says that they prefer bp to be 100 or below for their heart failure patients and heart rate to be in the 60s. My bp is that low at times but usually a little higher.

[scribbles-80]

Hi,

About six months ago just my evening dose of Entresto was increased from middle to high to see how my blood pressure levels coped. Whilst I was nervous, luckily it didn’t seem to have too strong an impact and as a result, within the last two weeks my morning dose has been upped, again with minimal side effects.

From what the cardiac team has told me, it can be worse starting the medication in terms of side effects than actually increasing dosage and whilst it is ideal to be at the maximum dose, it doesn’t suit everyone. Overall quality of life/health has to be considered.

It may be worth asking if a gradual increase is an option for you and if it doesn’t work out then you can return to your current level. Hope all goes well.

[theonethatgotaway1 in reply to scribbles-80]

Yeh that's great thank you. I would probably ask to do this to begin with as I did suffer bad sides upping to the middle. Got to a point where I was going to give up then one day the sides just vanished.

Have things improved for you? Feel better? Better ef rate?

[scribbles-80 in reply to theonethatgotaway1]

My experience, (although milder) the main side effects with Entresto have been fatigue and low bp, the former gradually improved over time whilst the latter is managed by medication.

As for EF, I’ve always been advised that whilst the numbers are a guideline, the best indicator is often how you are feeling and what you are capable of doing in your day to day life. My own EF has improved as a result of medication increases (up from 28% to 48% a year ago) so I am hoping that this last, recent increase will be of benefit too. Having gained so much of my life back and feeling pretty much back to the person I was before, has been worth the persevering with the medication despite the unwanted side effects.

I hope that the gradual dosage increase will be easier for your body to adjust to but ultimately whatever level you end up with, or if you try an alternative, it will be beneficial to your heart and health in the long term.

[am1875 in reply to scribbles-80]

Great news. Do you still take the middle dose in the morning along with the higher dose in the evenings? For about 8 months I took the lower dose. Last couple of months I take low dose in the morning and middle dose at night. I am beginning to feel the difference. My bp has increased. I walk a lot every day, briskly. Thank goodness. I’m going to ask to go to the middle dose twice a day and then hopefully to be able to tolerate the higher dose in the evenings. My EF was 40 last year. My cardiologist said they are recommending that everyone, even with stage 1 HF be on Entresto. All the best..

[scribbles-80 in reply to am1875]

It’s brilliant to hear that the combination of exercise and Entresto working its magic is improving the day to day quality of life for you (and hopefully increasing your EF at the same time too). I’ve always felt that the speed at which I could walk was a good indicator of overall health and helped me to gauge my progress and recovery.

I’ve now increased to the maximum dose both morning and evening and found the transition not a bad as I expected. I did experience a little fatigue but this has diminished over time and the improvement to my health outweighs this minor (to me) side effect. A higher dose is preferable (if you can tolerate it) and certainly worth trying, you can always drop down if adverse reactions impact your everyday life.

Try not to get too hung up on the EF numbers as how you feel and how much you are capable of doing are also important ways of measuring your improvement. It sounds like you are doing all the right things, just remember to be kind to yourself and take as much time as you need to recover. Keep up the good work and I wish you all the best.

[am1875 in reply to scribbles-80]

Very good advice. Cheers!

[Dave678]

I started on the middle Entresto dose and after a year I was upped to the max dose. Sadly, after a few months my Systolic began to drop to under 100 and my GP moved me back onto the middle Entresto dose. As my blood pressure increased he then upped me onto the high dose again with an instruction for me to let him know if my Systolic reading is under 95 for a while and he will put me back onto the medium dose. Other than blood pressure rises and falls - no other issues that I'm aware of with the Entresto and change of dosage.

[theonethatgotaway1 in reply to Dave678]

great stuff Dave. Do you feel any better on the high dose? Any further improvements with health?# I feel like i can go onto the higher dose now if it will help my heart health. I keep having issues with chest pains here n there. would love to see them vanish.

[Dave678 in reply to theonethatgotaway1]

Hi and sorry for the delay in replying. I did feel better on the high dose of Entresto and fortunately my blood pressure stayed nicely over 100 systolic. Maybe it’s a psychological thing as you feel the high dose is doing you more good - but at least I didn’t have any bad symptoms! Hope you’re progressing well.

[am1875 in reply to Dave678]

Dave, 100 is acceptable, correct? Mine has begun to creep back up to 100-110 after being on Entresto for about 10 months. I’m going to attempt to increase the dosage soon. Has it had a positive effect on your EF? Cheers!

[Dave678 in reply to am1875]

Hi….as to whether 100 systolic is OK depends on how you feel - hopefully no dizziness etc and what your GP feels is a correct figure for you. Sadly, I had a stent thrombosis a couple of weeks ago and, as a result, my blood pressure went down to 80-90 systolic so I was put back on the 49/51 mid dose. Thankfully it’s now over 100 and maybe in a couple of weeks I’ll be back on the high dose again. I feel it was a factor in my EF initially going up from 30-35 to 35-40 and was hoping it might have increased further before my thrombosis which knocked it back down to 30-35! Hopefully it can start helping my EF to rise once again now!

[am1875 in reply to Dave678]

Here’s hoping. All the best!

[IanEvans1960 in reply to Dave678]

My last Echo was a year ago and my EF was only 18. How often do the check? I’m going onto the highest does of Intresto soon and wondered if this year of treatment had made a difference. I have an appointment today to discuss a crt

[Dave678]

The main thing is always how you feel but it’s nice if the EF does go up. The best way to get an accurate figure is by a cardiac MRI but estimates are also done by echocardiograms. Hopefully you might get one of those two to give you an indication of any improvements. Plus, going onto the top (97/103) dose of Entresto should be of benefit for any potential EF increases. Good luck