Joining the entresto club: Heard so... - British Heart Fou...

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Joining the entresto club

HeartyJames profile image
12 Replies

Heard so much about this drug on this forum. I am now starting Entresto due to the EF now in severe zone. Stopping losarten and up titrate gradually to max.

Anything I should know?

I guess same as usual. Side effects for some, none for others. Hopefully it will help matters.

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HeartyJames
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12 Replies

Hello. I have been on this drug for 3 years now. I was 35 when i started with a ef rate of 12%. I noticed my hands started to warm back up within days of starting this drug. My ef was up to around 30% after 6 months and eventually up to 44% after 18 months.

I do notice that i get brain fog right after taking entresto. Extreme Fatigue at times. (i sometimes split the dose now on a morning as it becomes that bad and have actually skipped a tablet and felt great for that day).

Entresto is something i want to investigate as i do believe it worked in the beginning but now 3 years on i just seem to be stalled a bit and things are slightly declining. I'm now on the middle dose but it doesn't seem to have improved much more than i was on the low dose.

I also get aniexity and palpitations quite alot. At times chest discomfort. I can't say if this is linked or not. So, for me. Entresto was a wonder drug when my heart was real bad but it does come with its fatigue and brain fog effects.

Good luck. Keep us updated thanks

HeartyJames profile image
HeartyJames in reply to

Bit of a concern as I already have low BP, fatique, palps, dizziness and episodes of pain. So not sure how this will go.

in reply toHeartyJames

Oh yes i forgot. That first year my BP was extra low. My heart rate was actually sitting around 35Bpm! The nurse was shocked when she seen it. She quickly dropped my dose of betas but my BP stayed low throughout the first year as my heart started to heal. Its now around normal bp range. It was as low as 80/50. Even lower.

Hopefully starting on the low dose like i did, itll help strengthen the heart to get things improving. Fingers crossed. Good luck

Big hello to you,

With all my heart { as damaged as it is } I wish you all the success on this drug.

As I was told it has less of the bad side effects of many of our other drugs, but can be an absolute miracle drug to many { remember the millions on it that are not on this forum }.

So give it a go, you have little to lose.

My E/F { Ejection Fraction } was at -20% on starting and went to a point of -60% ! within 6 months, unfortunately its back down to 20-25% , so tests done { awaiting on someone reading them ] to get me up to the full dose { from the middle one. } and see if that does anything.

I was lucky and felt no difference on them { side effects } but certainly felt better in my self.

Good luck on this next step of your journey, its been a long one for you and I'm glad we have been along to help.

As ever take care.

HeartyJames profile image
HeartyJames in reply to

Thanks so much. Any improvement will be a good thing. Pacemaker seems to have settled in now anyway.. I cannot go back on the dapagafloxin yet due to an endocrine hypoglaecemia problem, so still waiting for appointments for tests.

am1875 profile image
am1875 in reply to

Hi Blue. Has your Dr. said what caused your ef to go back down? How long did it take to go from 60 to 25? Do you feel okay and have same energy level? Thanks for sharing.

in reply toam1875

Hello,

Very quickly approx 4 months, nowI am on the full dose with no improvement and it is still at 20% ish.

Yes I find at the 20-25% level I have less energy, headaches, listless etc.

But I'm alive and grateful for it

Take care

HeartyJames profile image
HeartyJames in reply to

similar here. No difference on entresto but no real side effects either.

Dave678 profile image
Dave678

First of all, congrats on being offered Entresto - a good drug to be on in my opinion. The low dose is a 24mg/26mg mix of Sacubitril & Valsartin, the middle dose 49/51 & the top 97/103. Most people I think are recommended to start on the middle dose - like I was back in 2021 with tests taken to see how you initially respond etc. Eventually I was put onto the higher dose but my BP really went down and was checked at approx 75/50 in a hospital visit. However, EF had increased from 30-35 to 35-40 so not all bad! So, I was moved back onto middle dose for a while but now back on higher dose with instructions to let GP Pharmacist know if my Systolic goes below 95 (take BP each day) or I feel too light headed when getting up etc and they’ll then get me back on middle dose, Good luck + watch your BP!

HeartyJames profile image
HeartyJames in reply toDave678

Thanks for replying. I am starting on lowest dose then after two weeks have blood test and if tolerate onto middle and repeat to max dose. My BP is usually 90 /70 and I already go dizzy and fatiqued. My heart rate is set to 50 by the pacemaker. Hope I can tolerate it :)

Flipping profile image
Flipping

Hi, I've been on this since Nov, started on low then middle and now on highest. I get tired more (having had chemo previously I wouldn't describe it as 'fatigue'). Other than that minor point I have had no side side effects at all. My EF was 15% and I haven't had re-test yet so just hoping it will improve as I progress.

HeartyJames profile image
HeartyJames

Now onto middle dose. So far so good....

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