Entresto…..lowest dose

[Twinkletoes64]

Hi, following on from my recent post about starting to take the middle dose of Entresto…… I couldn’t tolerate it…..ended up with a bad uti,kidney pain and then having to take antibiotics….. this led to more abdominal pain from my recent surgery……😵‍💫🙁🎢so it’s been a very stressful month! am wondering what experiences people have had of staying on the lower dose and how high their ejection fraction has risen to?

Thank you

[BeKind28-]

Hello

Sorry no one seems to have replied and you are struggling on the lowest dose of this med

I have not taken it but have been on plenty that have made me feel worse

I hope you manage to get this sorted and you could always talk with the BHF Nurses that will give you some good advice x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm

[Twinkletoes64 in reply to BeKind28-]

Yep no one did reply🙁so thank you for your reply🌞I did actually end up calling the helpline and I spoke to someone really helpful who totally put my mind at ease and made me feel much more confident….I think it’s all been complicated by the recent surgery I had and the ones before….thanks for helpline info…it’s great we’ve got that resource…am going to trust my instinct from now on…got Cardiology appointment finally in July with new cardiologist (pity cos my previous one knew me well!)Thanks again

[BeKind28- in reply to Twinkletoes64]

Hello

I did not know much about the medication etc but I think when we post and no one replies it can make us feel worse so I tried my best to let you know I was listening and I am glad the BHF Nurses were able to put your mind at ease I knew they would and you have the number now if ever needed to phone them for advice

When you get used to a Cardiologist and they get to know you it is always feels daunting when we are swapped to a new one but fingers crossed this one will be just as good and let us know how you get on x

[Lezzers]

I've not heard of anyone getting a UTI from Entresto it's usually your blood pressure it affects, are you also on dapagliflozin by any chance?

My husband is on the lowest dose of Entresto and has been for well over a year. Unfortunately his last echos showed his EF hadn't improved but has gone down instead but he has been very poorly. However, even the lowest dose is helping to protect your heart & your cardiologist will probably take the view that the lowest dose is better than no dose at all. They will also say don't focus on your EF, it's how you feel that matters. Lots of people have a high EF but are very symptomatic & others with a low EF have few, if any symptoms. One of the strange anomalies of HF sadly.

[Twinkletoes64 in reply to Lezzers]

Hiya Lezzers,think uti was stress related and also possibly to do with latest op,have come off dapagliflozin a while ago because of recurrent uti’s,was not going to put up with that as a flipping’ side effect!😡yep you’re right about symptoms,I seem to be ok apart from random breathlessness,but never on exertion weirdly!Thanks for your reply…. Very helpful🌞it’s always great to hear other people’s experiences and I like to go to Cardiology appointments with a bit more knowledge under my belt.

[Lezzers in reply to Twinkletoes64]

Good luck 🤞 with your appointment

[Penoir53]

I am on baby dose too and my ejection fraction has gone up. I’ve had to reduce other drugs to help bp and kidneys. Oh it’s a tough drug. They don’t tell you that when the magic properties are revealed. I was a misery for months with kidney discomfort and pelvic pain and upset tummy. Antibiotics. Ultrasounds. You name it. I’ve reached a truce now. It’s helping defo. Good luck xx

[Twinkletoes64 in reply to Penoir53]

Hi,

Thanks for your reply…sounds very like my journey on it too. Am adamant I am sticking to lowest dose now as E/F has gone up 14% on it!

This experience has definitely made me learn trust my own intuition and when I next see my cardiologist I am going to be very forthright about it!!

Of course we all react differently to things but no one knows our body like we do and we have to trust that🌞

[Penoir53]

ps I have been off here as changed phone and needed new pw for the site. I would defo have replied earlier. It’s a lonely world on dapa and entresto as they spur us on into a difficult few months. Sending love xx

[LizzieS33]

my husband started on the lowest dose in march and his EF went from 38-46% in a month. He has been on the middle dose for a month and has just had a blood test to check kidney function etc. keeping fingers crossed! I agree that taking the lower dose will still give your heart some protection.