Anybody tried to increase Entresto dose? - British Heart Fou...

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Anybody tried to increase Entresto dose?

laura_dropstitch profile image
laura_dropstitchHeart Star
37 Replies

Hello. I've been taking Entresto (49/51mg twice a day) for heart failure for a couple of years. After an initial spell of dizziness (lasting just a few weeks) I tolerated it pretty well. Now I'm trying to increase my dose slightly (50% extra) on the advice of my cardiologist. My heart failure nurse is monitoring this. Well, I am feeling awful - just exhausted and weak and heavy and quite depressed. All I want to do is be asleep. I go back to see the HF nurse on Wednesday, where I'll get bloods and blood pressure checked, etc. I'm sort of hoping that she'll tell me to revert to my old dose (that my kidneys will be playing up or my blood pressure too low to continue) but I can't decide what to do if the decision is left up to me. The reason for the increase is for the longer term benefits/protection it offers, so some side effects might be worth tolerating, but not the tiredness I'm experiencing at the moment. I just wondered if any of you have succeeded in increasing Entresto and whether you think it might be worth my while to stick with it a bit longer, i.e. might I be able to tolerate this higher dose given more time? I've been on an increased dose for about a fortnight and only reached the full increase on Wednesday, so it is early days, although the side effects seem to be getting worse rather than better so far. I'm very stubborn and don't like to give up on things but appreciate this might be a situation where I should override that instinct! Thanks for your help!

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laura_dropstitch
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Lezzers profile image
Lezzers

My husband isn't on Entresto though his cardiologist is working towards this, if they can improve his BP. But I belong to a HF support group and many of them have reported the same symptoms on Entresto. Some have persevered and have been OK on it, others have had to drop back to the previous dosage. It is a really good drug to take for HF but not everyone can tolerate it. Would be interested to know what your nurse says.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lezzers

The heart nurse is not convinced/hopeful that I will be able to tolerate increase. Their rule of thumb (very crudely speaking) is that they try to increase if your blood pressure is 100/xx and leave your dosage alone if BP is under that. My BP is almost always 90/60 (or 50) but was reading 100/something the one time the cardiologist himself took it. Was back to usual 90/60 for HF nurse so really we are just "giving it a go" with the increase, fully expecting my body won't tolerate it. Whole thing has just reopened the can of worms about pros and cons of medication, wondering how many of my supposed heart failure symptoms could actually be side effects of the medication to treat it. Etc. I've been really surprised at how down the whole thing has made me feel, although it's all too easy to feel depressed when energy is at close to zero, I know.

Thanks for sharing your thoughts. I'll update once I've seen the nurse on Wednesday. Hope all goes well with your husband and his medications x

Lezzers profile image
Lezzers in reply to laura_dropstitch

Thank you. I can't really comment on the meds side effects as they've never been able to get husband meds optimised because of BP issues, hes on a very low dose of candesartan, and just early this year was put on the lowest dosages of furosmide & bisoprolol, he can't tolerate spironolactone due to potassium issues. However, the cardiologist said a couple of months ago they're thinking of the future & need to get these meds optimised hence the tweaking now. Are you aware that there is another HF drug that was announced yesterday? I'm still trying to work my way through the details, and it's still at testing stages but showing very good results.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lezzers

I did see that but haven't quite managed to get my head around it yet. Sounded like it was for quite a specific HF demographic that I might not be part of? Could have interpreted that totally wrong though - brain is weak at the moment 😂 I know Pumping Marvellous seemed very excited about the development. Will try to read more about it today. X

Lezzers profile image
Lezzers in reply to laura_dropstitch

Yeah, I agree it's not easy reading but I do trust PM 100%, if they're excited then it's a good development. Who knows, this may be the answer to my husbands intolerance of meds available now. Good luck with your nurse & the reading.

Shoshov profile image
Shoshov in reply to Lezzers

morning lezzers. just read dapa info. here’s an interesting twist on that. i haven’t fully researched it yet but it certainly jumped out at me when i read it. i’m a type2 diabetic and was on dapagliflozin for it for years. i reversed my diabetes around february/march and was taken off all meds. at that point my heart wasn’t giving me too much trouble.since stopped taking dapa i have had lots of unstable angina,a restenosis in may, more unstable angina and another stent in july. now plagued with stable angina. these changes have only happened since stopping dapa. that’s very interesting and pretty scary too. need to speak to someone i think❤️

Lezzers profile image
Lezzers in reply to Shoshov

Eek, That is very interesting. Unstable angina is definitely not good, Kevin used to get that a lot, isobide monitrate sorted it out with no further intervention. Definately need to speak to someone sooner rather than later, how would you feel bout going back on dapa, is that even an option? I definately need to look at the info in more depth, just glanced at it really.

Shoshov profile image
Shoshov in reply to Lezzers

well that’s what i was thinking. up until i came off it i was reasonably stable apart from dizzyness issues due to meds. after reading this it made me wonder. think i’ll give diabetes nurse a call❤️

Lezzers profile image
Lezzers in reply to Shoshov

Let us know how you get on, take care x

Shoshov profile image
Shoshov in reply to Lezzers

will do x

Prada47 profile image
Prada47

Hi Laura

I went up to 49/51 almost 3 weeks ago, and had bloods taken last week with a view to going to max dose. Cardiologist is pushing to get me to maximum asap !! Before the increase he stopped Furosemide and Isosorbide to try to increase my BP prior to increasing Entresto. BP was 90/60 or around that level, after 2 month it's now 117/65 with a pulse of 55 which has also come up from the mid 30s with Bisoprolol reduced from 10 mg to 7.5. It would appear that my other meds are being manipulated so I can tolerate Entresto better.

I have a pretty good EF at 43% but my symptoms are short of breath for no apparent reason and also sometimes on exercise, otherwise quite good. One thing I have noticed on the increased dose is that I am not sleeping well and on occasion slight light headed, but other wise quite fair. I think I am one of those people with a decent EF but on the NYHA scale can be 2/3. Forgot to say my heart pacing currently is good so no point in a pacemaker etc. I do have a degree of LBBB and a widening QRS which may indicate intervention at a later date (extra information because I know your a geek LOL

I do hope your feeling better soon take care.

Best Regards

Lezzers profile image
Lezzers in reply to Prada47

That's interesting bout your BP. The cardiologist has gradually been reducing husbands isobard monitrate to get his BP raised so they can titrate up his candesartan & bisoprolol before trying Entresto, so far it's not worked and BP is stubbornly refusing to move. He's only on a low dose of furosmide and dropping this is not really an option

Prada47 profile image
Prada47 in reply to Lezzers

Hello Leslie

I was on 40mg Furosemide and H F Nurse told me to weigh everyday and phone in if it ever increased by more than1/2 a kilo in a day, after stopping Furosemide !

I do take Eplerenone 25mg which I believe has a light Diuretic effect. I forgot to add I think Candesartan needs to be stopped 24 hours prior to starting Entresto well mine was and I have never been put back onto it !!

regards

Lezzers profile image
Lezzers in reply to Prada47

Hi Frank, did you read about the new HF drug on the Pumping Marvellous website?

Prada47 profile image
Prada47 in reply to Lezzers

No I haven't read about the new medication but I will look ( name ) ?

I have volunteered for trials at my Heart Failure Clinic and it would appear that it comes under Cardiac Rehab at my local trust, so just waiting to hear. One of the reasons I am being considered as a candidate for trials is because of a Positive Mental Attitude !!! I am determined I won't let this S***y Wonky Heart get me down. lol

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Prada47

m.facebook.com/353840388122... Here's the post on Facebook, Frank x

Prada47 profile image
Prada47 in reply to laura_dropstitch

Thanks read it looks promising.

Lezzers profile image
Lezzers in reply to Prada47

Fab attitude Frank, Kevin refuses to let his wonky heart define him, now if we could just get those blooming meds sorted!! Kevin's is part of a trial looking into tiredness with long term conditions, it's really only paper based but tiredness is one of the biggest things we keep hearing about. As said before, let me know how you get on with the trials. Cheers

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Prada47

No reply for you, Frank! Geek indeed!! 😂 See above response to Lezzers.

It's interesting that both of you have experienced the prioritising of Entresto over other meds. Makes me think maybe I should persevere a while longer. Hmm. So much to think about...and all with my brain in a terrible Entresto-induced fog!

Good luck with the changes to your meds. Keep me posted about how you get on.

Lots of love xx

laura_dropstitch profile image
laura_dropstitchHeart Star

Hello, all. As promised, here's an update on my attempts to increase Entresto dose. My side effects got worse before they got better (fainting etc) but check-up by HF nurse revealed only slight decrease in pulse and blood pressure so we agreed I would persevere for another four weeks. I'm now nearly two weeks into that and am beginning to feel my normal tired self again, much the same as I felt on previous dose. Back early October to get blood tests and pulse/blood pressure checked again, but I think it's looking hopeful that I'm going to be able to tolerate this higher dose. Result!

Lezzers profile image
Lezzers in reply to laura_dropstitch

I'm glad to hear it's going well, fingers crossed that it continues. Unfortunately it's not looking likely my husband will be allowed to take it because of BP issues, though his readings are now usually low 100's over low 70's. Could I ask what you were taking before the Entresto & the doseage? Thank you

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lezzers

Before Entresto I was taking Enalapril Maleate, but I can't remember the dose - sorry. Will let you know if it comes back to me. Been on Entresto 49/51 for a good couple of years, I think, before attempting this increase. I also take beta blockers and diuretics - both before and since switching Enalapril for Entresto. Hope that helps x

Lezzers profile image
Lezzers in reply to laura_dropstitch

Thank you, lm not familiar with Enalapril. My husband is on a low dose of candesartan & bisoprolol, unfortunately he can't get his meds optimised so it's something we need to discuss at the next cardiologist appt.

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lezzers

Enalapril Maleate is an ACE inhibitor. Info about ace inhibitors in general here - bhf.org.uk/informationsuppo... in case that's helpful. Hope you manage to make some progress with your husband's meds at the next appointment. Good luck. X

Lezzers profile image
Lezzers in reply to laura_dropstitch

Thank you, I'll have a read of that tonight. Kevins was originally on an ace inhibitor but was switched to candesartan as the standard triple therapy for HF was candesartan, spironolactone and beta blocker. But as he's intolerant to spironolactone and can only tolerate low doses of candesartan & bisoprolol I might ask if he can go back on lisinopril as I've been told overall ace inhibitors are better for the heart then Arbs. Something to think about

Prada47 profile image
Prada47 in reply to Lezzers

Hi Leslie

When I had a problem with Spironolactone I was switched to Eplerenone which I tolerated better. Spironolactone was giving me man boobs which wasn't funny lol

Best Regards

Lezzers profile image
Lezzers in reply to Prada47

Thanks Frank, Kevin's problem was potassium issues with the spironolactone, I did ask about alternatives and was told no. Though he was put on a low dose of furosmide, which has now been stopped to try & improve his BP. Should be seeing cardiologist in a couple of months so gonna ask bout where we go from here.

Once you've got those man boobs you're stuck with them!! 😁

Prada47 profile image
Prada47 in reply to Lezzers

Managed to get shut of them Leslie but with difficulty my GP noticed and straight away she knew what it was. I thought it was just fluid !!

Prada47 profile image
Prada47

Hi Laura

Are you now on 98/103

I think that's what the top dose is ?? is it twice a day?

I do hope your feeling well and not so tired?

I think I see the Heart Nurse in about 2 weeks to go up to the next dose, it just seems a big jump from 49/51 slightly nervous but hope it works out OK.

I'm feeling OK not to tired just bloody cough is back,I thought I had got shut of that with the Ramipril. Still if Entresto is making my heart stronger I will put up with it.

Take Care

Frank aka Prada

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Prada47

Hi Frank. I was already on 49/51 twice a day and now I take 24/26 (or some such dose - 50% extra anyway) on top of that, so...? 73/77 twice a day? I don't imagine I'll be attempting to increase beyond that any time soon, but will see what the HF nurse says in a couple of weeks.

That's bad news about your cough returning - must be annoying. Hope the increased dose doesn't make it any worse. Though if you had to choose between the cough and the man boobs...? 😂

Take care of yourself xx

Prada47 profile image
Prada47 in reply to laura_dropstitch

Hi Laura

I must have had one of those senior moments

I knew they just doubled 49 to 98, 51 to 103 Forgot that it also went down the way so they just added 1/2 dose to your 49/51 to make 73/77 Makes me feel better I thought I was going to jump direct to 98/103. Heart Nurse did say she was being kind to me starting me on a low dose and building up over a few months !!!

Take Care

Invermill profile image
Invermill

Hi

I’ve been on Sacubitril and Valsartan 97/103mg for over three years now with no problem, hope you stick with it and get better.

Dundeeman27 profile image
Dundeeman27

Hello Laura,- I realise it is over a year since you wrote your note re Entresto and exhaustion, which I found by chance on the main Internet. You describe my position exactly,- I was on 49/51 for several months having been on 24/26 for a year due to low BP. After a small rise in BP and feeling much more energetic after getting a fancy CRT-D fitted I was put on 97/103 5-6weeks ago. About 2 weeks thereafter l realised I was completely knackered after any activity and so after some 6 weeks on the 97/103,my GP has today put me back to 49/51. Fingers crossed I return to 6 weeks ago condition. How are you doing now?

Regards Ian

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Dundeeman27

Sorry, I only just noticed this reply! I ended up not being able to maintain that higher dose of Entresto - just felt absolutely exhausted all the time. I did manage a smaller increase, however, and now take 49/51 in the morning and 49/51 + 24/26 in the evening. I think it's OK? Never sure how much to blame on my heart and how much to blame on the medication! I hope you are feeling well now and have found a dose that works for you.

Laura

Lcajunheat profile image
Lcajunheat

Why does the fluid retention keep happening to me I take my meds like I’m suppose to and still have the fluid retention in abdomen area

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Lcajunheat

Really frustrating :( I can't offer any advice other than to keep feeding back to your doctor in the hope they can find the optimum doses/meds? Good luck!

Doublef profile image
Doublef

Hi, my blood pressure kept crashing down to 90/50 when the strength was doubled with consequence of dizziness tiredness and related problems, going back to previous dose my BP is stabilised around 120/60. I take a number of related drugs, for heart failure, including pacemaker/defibrillator

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