Entresto Anyone els on this new drug? - British Heart Fou...

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Entresto Anyone els on this new drug?

Graham1956 profile image
34 Replies

Hi everyone I’m a new member and this is my very first post so please forgive me if I’m rambling as not sure Where to begin. Well here goes I had a heart attack and had to have 2 stents back in January 2015. I’ve had lots of tests over the years since and was put on the usual cocktail of meds tempered to suit me. but I was recently changed from one of them Losartan to a new drug called Entresto but unfortunately this drug didn’t seem to agree with me. I became more breathless and lightheaded anyway after reaching 50mg (mid dose) my heart failure nurse had to recommend that due to symptoms I revert back to Losartan 50mg. Anyway I’m still after couple weeks back on Losartan occasionally feeling light headed. My blood pressure has always been on low side so am only able to manage low dose 1.25mg bisoprolol taken at night before bedtime. I’ve been on that dose for long time without feeling lightheaded as often as I do now. The lightheaded feeling makes me feel anxious and I guess that magnifies the situation. Is there anyone els out there on or been on Entresto? Anyone els feeling lightheaded occasionally? If so do you know the cause? I’m just praying it’s not my heart getting weaker or am I letting anxiety get the best of me? Thanks for reading this post any replies would be greatly appreciated.

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34 Replies
Riedenise profile image
Riedenise

Just wanted to welcome you. I'm sorry but I can't give you any advice about your new medication. No doubt someo

Riedenise profile image
Riedenise in reply to Riedenise

On here will be able to help you. X Rie

skid112 profile image
skid112Heart Star

Hi Graham,

not on the new drug, but a cocktail of a few and yes occasionally light headed. I put it down to getting up to fast, or something similar, a few deep breaths and I get my equilibrium back but I do agree it can be a little unsettling at times

Graham1956 profile image
Graham1956

Hi, thanks for your reply. The lightheaded feeling just seems to happen randomly not just when getting up to quickly, it Just seems worse lately and wondering if it’s anything to do with having short time on Entresto? Then reverting back to Losartan. It’s hopefully down to medication as most heart meds seem to have *lightheaded* as a common side affect. According to tests My heart function is apparently stable at around 38% I’m having regular blood tests (monthly) and as I don’t hear anything back from BHF heart nurse I guess all’s well. One other thing I’m not drinking 2ltrs water daily as I was told to but I drink diluted orange juice instead. Could this be a reason for feeling occasionally lightheaded? I Guess lots if not all heart patients are told to drink plenty of water with their meds. Looking forward to reading other members reply’s as to the lightheaded feeling and how to deal with it.

Kristin1812 profile image
Kristin1812Heart Star in reply to Graham1956

More water might help. I have lots of heart issues, and If I feel lightheaded in exercise class I’m told to drink immediately. It works!

laura_dropstitch profile image
laura_dropstitchHeart Star

Hi. I have been taking Entresto since the start of the year. Now I get on fine with it, no issues at all, but I was incredibly dizzy for the first few weeks. My other meds do make me light-headed, I think it's just a consequence of the low blood pressure that they're designed to cause.

I would check with your nurse/GP/consultant about the fluid intake. Most patients with hearts functioning below normal levels are advised to drink no more than 1.5 litres a day. Could they have meant 2 litres as a maximum rather than a minimum?

Graham1956 profile image
Graham1956 in reply to laura_dropstitch

Hi Laura, thanks so much for reply. When I was put on Entresto instead of Losartan I had high hopes of feeling better so am disappointed to be back on Losartan. My blood pressure didn’t really change much on Entresto so I did persevere but after 6 to 8 weeks I felt more breathless and lightheaded generally more unwell than I remembered feeling on Losartan. The heart nurses are unable to get me onto higher doses of meds like bisoprolol due to blood pressure problems but funnily enough my lightheadedness seems to be unrelated to blood pressure. The cardiologist said my heart is weak due to damage caused by me not seeking help and my heart not getting enough oxygen for over 10hrs but I wasn’t in great pain just thought it was indigestion. Anyway she said tests results show I don’t need defibrillator fitting at present time but I guess it’s something she feels I may need at later date. Just don’t like feeling lightheaded it’s especially worse at night.

Patches2 profile image
Patches2

I don’t know whether this will help: there was an item on our TV news re Entresto. This patient had heart failure, was a farmer and could not do his work due to breathlessness. He managed to get the authorities to pay for the Entresto and was a different person ever since, doing his farm work, no breathing problems etc. I believe it is a very expensive drug.

Good luck!

Graham1956 profile image
Graham1956

Hi Patches, thanks for commenting. Perhaps I should of stayed on Entresto it’s supposed to make a positive difference, I read that it’s supposed to be a wonder drug keeps you out of A&E Anyone els taking Entresto having positive or negative effects would like to comment?

laura_dropstitch profile image
laura_dropstitchHeart Star in reply to Graham1956

I have had more energy this year, for sure. I'm also being given iron as part of a medical trial, which might be a factor, but I do feel like Entresto has made more of a difference than any of the drugs I was on previously.

Prada47 profile image
Prada47

I spoke to a Cardiologist on Tuesday about being light headed and the reply was " I am not really surprised the cocktail of medication you are on ". I take Eplerenone down from 50mg to 25mg with no change and also my Candesartan was reduced from 8mg to 6mg, Bisoprolol is at 5 mg and Isosorbide is at 60mg, Furosemide I titrate up and down depending on fluid level (Heart Nurse advice ) I can wake at night light headed but mostly it's if I have been bending down and then stand up. One side effect which I don't like is sometimes when walking I feel I am going sideways only for a moment or to but odd sensation. Just put these reactions down to show that other people have odd feelings when on various Heart Meds.

my BP is107/63 with a pulse of 40/55

Best Regards

Frank W

Graham1956 profile image
Graham1956 in reply to Prada47

Thanks for your reply Frank. Sounds like you’re having same reactions to meds as myself. Most interesting to hear other people’s experiences. I spoke with heart nurse yesterday and she said I need to have a blood test due to changing back to Losartan after a brief spell on Entresto check kidney function I guess. So will do that today. Best regards to you.

Elsabounre profile image
Elsabounre in reply to Prada47

I think you are taking so many meds and they are all lowering the blood pressure..you actually do not need 3 or 4 BP lowering drugs..I do take Entresto..and never went higher than liLowest dose or my bp is too low and I feel unwell..also take Bisoprolol when BP allows it..so not on a regular basis..after 1 year..my EF did improve by 12 points..so I think the Entresto is working along with the beta blocker..they are the only meds I take..the Docs get over excited anf really give too many drugs at once for same effects...you kniw your body best..measure your BP and pulse regularly..you will know how you doing..keep a record between visits so the Doc has your information on hand..I do this..it helps you and impresses your Cardiologist as well

Hi I was diagnosed with heart failure, dilated cardiomyopathy in Feb, I started on ramipril then moved on to candesartan and now on entresto, which I have been taking for about 6 weeks, 24/26 twice a day, along with two ferusomide, one spirolactane and 2.5 bisoprolol! Unfortunately none of them have made me feel any better my blood pressure is only 80/60 not great at all lol, I feel sick and dizzy quite a lot and sometimes, a not kind of there feeling, it's horrible, but I don't find it any worse than my previous meds so I am going to stick with the entresto and hope it will help the old ticker,with heart failure as Laura said fluid intake is usually restricted to 2 litres max, which to be honest I find it difficult as I always seem to be thirsty, it all makes you so fed up, I am also waiting for an appointment to get a defibrillator implant, my bloods have all been fine with entresto, take care and I hope you get the meds sorted, char xx

Graham1956 profile image
Graham1956 in reply to

Thanks for your reply Char. You have even lower blood pressure than me! Mine seems to be around mid 90s The other week I had a blood test and almost blacked out When the nurse took my blood pressure it had dropped to 82 must of been the shock of giving blood! Usually though low blood pressure doesn’t seem to bother me. I seemed ok on the low dose Entresto that your on but after they moved me up to mid dose I started to feel more unwell lightheaded etc. Now I’m back on 25mg Losartan I seem to feel better but still getting bouts of lightheadedness, especially at night. I’ve been told like everyone on here I guess that the heart can’t repair itself so the damage is permanent and I will need to take meds for rest of my life, but so many can’t be good for your kidneys? I suppose that’s why you need to drink plenty of water. I will have faith in the experts though and take any pill they tell me to but will I ever get to feel “normal” again? I thought having stents put in would make things better but in my case it hasn’t. Must be the damage, my heart damage is classed as severe. Still could really do without the lightheaded feeling as if you’re about to faint, it’s making me more anxious which just makes it even worse. All the best with your defibrillator I’ve heard it’s a simple procedure nothing to worry about, consultant said I will need one to but luckily not just yet. Regards Graham

in reply to Graham1956

Hi it is a pain I wish I could do something to make it higher, the opposite of most folk! I worry when I am driving all the time, I try not to venture far now, my heart nurse would like my dosage increased to try and get heart rate down from 68 to 60 but the blood pressure is a big prob, she is going to check with the cardiologist to see if he can come up with something, will keep you posted, char x

Graham1956 profile image
Graham1956

Hi Char, it’s same for me over the 2 years I’ve been on meds the heart nurse has tried to get dosage up but it never seems to be long before they tell me to go back on lower dose. Hopefully though in time I’ll be on required dosage. Best wishes

mariancolyer profile image
mariancolyer

Hi there. I take the full dose of Entresto twice a day. From being a non smoking, vegetarian and not an ounce overweight, I was diagnosed with Dilated Cardiomyopathy recently. Apparently I was in danger of cardiac arrest any minute - according to my specialist.

However, Entresto seems to be agreeing with me so far. I say this as things can so often change. I do get a little light headed occasionally as I have low blood pressure but generally it seems to be doing the trick. The lightheadness will be caused by your low blood pressure. Do tell your Heart Failure nurse as important.

I understand completely your anxiety but I tend to overfill my time so I don't have time to think. Initially I could not believe my diagnosis but now I'm determined to live every minute to the "nth" degree.

lifeisforliving profile image
lifeisforliving

Just came across this post and have now joined. My husband has severe heart failure after a CA followed by 5 x bypass and new mitral valve 5 years ago. He has been on Entresto for over a year as his options had run out really. He did feel more dizzy than usual when he started taking Entresto. But he was advised by his BHF nurse that he should persevere. As with all meds its about balance. It took approximately 6 months to get it right but it has decreased the number of clinic visits and he takes less meds including less furosemide. His BP used to be on the high side and it is now 120/80. How brilliant is that for someone with less than 35% EF? Its perseverance and balance BUT Entresto probably doesn't suit everyone. Hope that helps someone.

not2worry profile image
not2worry

My hubby was on Entresto. The doc miss prescribed the dosage and but him on the maximum strength! It needs to be slowly and gradually introduced to your body. It was a nightmare. He slept for 20 hours for a week. Our GP took him off and then he had AFib. Cardio doc says that AFib wasn’t caused by Entresto...I have my doubts. In any case the med wasn’t meant to be for him. It’s a new drug that just got approved here in the States. Just be sure to have your doc watch your kidney function. It can be a pretty nasty drug on that front. I did a lot of investigating into Entresto. The heart docs think it’s great but the long term affects on the body are still unknown. It’s also a pricey drug $500 for a month supply. Seems to be better for folks under 60 but here in US the TV ads show it with us seniors walking breathlessly before then doing cartwheels and hand flips with the grandkids after taking Entresto. God Speed with your recovery.

Swageblock profile image
Swageblock

Hi, interesting to read the comments re Entresto, I'm currently on Losarton but there is a suggestion of moving to Entresto once echocardiogram results are in. My ICD delivered a jump start a couple of weeks ago [which I didn't notice despite being wide awake] so am waiting for hospital/doctors to advise. If I stay on Losarton my driving licence is suspended for 2years, if move to Entresto might only be 6 months. Living in deepest darkest Cornwall a vehicle is pretty essential so am trying to get info. Cheers

Lezzers profile image
Lezzers in reply to Swageblock

Can I ask about your jump start? How did you find out your ICD had shocked you?

Swageblock profile image
Swageblock in reply to Lezzers

I have a monitoring unit by my bed which reads the ICD every night and sends the readings to the cardiology unit at Treliske hospital and any unusual occurence triggers alarms etc with them. I was on holiday so the ICD wasn't scanned till the following day[friday] and the hospital contacted me on saturday.

Somewhat confused as I didn't feel the jump start, apparently it isn't a sensation that you miss or ignore[?], and have been very careful about not doing too much, which I find difficult!

Lezzers profile image
Lezzers in reply to Swageblock

Thank you for your reply. Were the hospital able to say why you wasn't aware of the shock?

Swageblock profile image
Swageblock in reply to Lezzers

No. They are surprised but can offer no explanation. The 1st time is understandable as I was fast asleep but this time I was sitting at a dining table with 5 other people in an hotel having breakfast ! The monitor picks up the exact time so I can trace where I was .

Have an echocardiogram scheduled for Wednesday so might get more info in the next couple of weeks !

Lezzers profile image
Lezzers in reply to Swageblock

Thank you. My husband had a bit of an issue whilst he was sound asleep this week & I wondered if his ICD had shocked him though I always thought he'd be aware of of it. He's also home monitored and downloads are sent daily to Papworth, we've not heard from them presumably all is OK.

Swageblock profile image
Swageblock in reply to Lezzers

I can only speak about reliske [Troro] Hospital, they took 3 days [including a Sunday] to contact me 2 years ago, but this time was within 24hrs.

Home all is ok and it was a false alarm.

Swageblock profile image
Swageblock in reply to Swageblock

Spelling 1; Truro not Troro and 2; Hope not home !

Vivi2711 profile image
Vivi2711

Entersto is a combination of sacubatril & valsartan. It's main purpose is to improve your Ejection fraction. Apart from the side effects you had undergone, it may have a hit on your renal impairment too. The lightheadedness arising out of losartan has to go shortly when your body adjusts to the drug or if persists your BP should be too low or at times your sodium may also be low since losartan always comes with potassium which tends to counter sodium.

A denovo consideration by the cardiologist based on the latest clinical examination is required please

Hoocher profile image
Hoocher

I've been on Entresto 24 mg since Feb and I'm constantly having light-headedness, shortness of breath, amongst other side effects. I was on Ramipril before and this never happened

I've just had my Entresto raised to the middle dose of 49/51. It's been a week, now and for the last 3 days I've felt dizzy, fatigued. I'm usually swinging from the trees with energy but have read my symptoms are quite normal. I'm gonna stick with it as I'm told the benefits to EF are good, mine being 33 on last checkup. I'll keep you updated as to how long the side effects last or if they decrease at all.

Graham1956 profile image
Graham1956

Yes I too was bit lightheaded in beginning of move onto Entresto but now everything seems to be ok.

Sooz34 profile image
Sooz34

I'm on Entresto too and for me it's been great. As yet no side effects and been on it about a year now x

Barre01 profile image
Barre01

hi

I started on the low dose of Entresto 12 mths ago, no adverse reaction. Increased to middle dose after a few months and felt rotten for a while, now settled down and feeling quite a lot better. Consultant said he wanted me on the highest dose I could tolerate.

Best wishes

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