Entresto

[BSA20]

Have just been prescribed Entresto sacubitril/valsartan 24mg/26mg to be taken twice a day morning and evening. Has anyone else been prescribed this? If so, how did you get on with it and did your blood pressure suddenly drop to below 110/70? Thank you.

[RufusScamp]

I have been on it for a couple of years, and my EF improved dramatically. My blood pressure has come down, but I am not sure which of my meds is responsible.

[Etzel]

I'm hoping you get some good replies here as I have just received the letter saying they are switching me on Monday!!

[Anon2023]

hi. I’m on the highest dose of entresto and haven’t experienced any side effects. I’ve been on entresto about 8 months now. I had a perfusion scan a couple of months ago which showed that my EF had improved from 44% to 53% My blood pressure has remained ok throughout. I hear really positive reviews about entresto and I really hope that it works well for you.

[BSA20 in reply to Anon2023]

Many thanks for your reply. You and others have mentioned EF but it is not mentioned in any of my paperwork. Would you let me know what EF stands for. Thanks.

[Anon2023 in reply to BSA20]

hi. It’s ejection fraction. It’s the rate that your heart pumps blood out. Nobody is ever 100%. Normal is about 60%. It’s not the only measurement of heart efficiency so if it’s not mentioned in your paperwork then it’s probably fine.

[BSA20 in reply to Anon2023]

Thank you for your explanation. Didn't feel too good when waking this morning and after taking my tablet I took my blood pressure and found it was 100 again. The clinic nurse said it was good for the heart but it is not fine for the rest of me.

[Anon2023 in reply to BSA20]

hi. Try doing your blood pressure before taking your meds. I was always told to have a drink of water too as dehydration can give lower BP results.

[am1875 in reply to Anon2023]

Hi. From what I’ve been told, 100 bp shouldn’t be a problem. Just saw an article about Entresto effect on kidneys. Google: Entresto in HF Tied to Less Kidney Decline

[BSA20 in reply to am1875]

I can honestly say 100 doesn't suit my body at all, coupled with a pulse rate of 54 which I have been told is good. When I go for a walk now I feel as if I am walking through treacle. On Tuesday I didn't take my morning pill as I had two appointments and I felt amazing and my walking was back to normal Took the pill yesterday and today and I feel awful again.

[am1875 in reply to BSA20]

I may feel better if my hr is higher. Haven’t thought about it. However, sometimes when I am going on an outing, I don’t take some of my meds that morning and feel much better. Just never connected it to hr. Wish you well.

[Hidden]

Hello. Yes my ef rate improved from 12% to over 40%. It has helped but i do get side effects everyday i take them tablets. Brain fog and fatigue type feeling. Feeling real crappy some days on it. BP did drop in the early days but that could be down to heart failure itself. it was real low, 76/50. bpm was 35! It does settle and now around 100/70

[am1875 in reply to Hidden]

Hi. I’ve found that my bp drops after eating. Today it was 75/44 for about 30 min. after eating, then instantly went up to 90/50-110/70. I emailed my Cardiologist and he said to watch it closely for the next few days. I’ve been on middle dose of Entresto for about 1 week. He doesn’t intend to reduce the dosage of Entresto but instead would first reduce the Eplerenone.

[am1875 in reply to Hidden]

100/70 is a good range for me. It got really low when I started Entresto so my cardiologist advised lowering elpherone. We’ll see how that works.

[Deejay62]

Hi I’m on 1 twice a day because I couldn’t tolerate 2 twice a day. My blood pressure is usually on the 110 over 70 mark but on the odd occasion it can go lower to around 90s over 68 ish and I feel dizzy. I take a cocktail of heart failure meds and they said they want to keep my blood pressure as low as possible. I’ve been taking it 51/2 years now

[BSA20 in reply to Deejay62]

Hello Deejay. I took my BP today and it was 98/71 which scared me. Phoned Cardiac Rehab and was told that is where they want it for the heart to heal but I might feel dizzy and faint. Was told to do more walking but now scared to in case I faint and break something. Can't see myself staying on it with that risk.

[Deejay62 in reply to BSA20]

It’s a difficult situation because the lower the blood pressure the less work the heart as to do. I know my area well and very seldom venture out further alone because of dizziness, so when I do feel dizzy I know where I can hold on then go and sit down.

[Deejay62 in reply to Deejay62]

I must add drink a lot of water and always walk with a bottle of water when you go out, because that will help. It brings your B/P up slightly.

[BSA20 in reply to Deejay62]

I phoned the Community Cardiac Clinic who prescribed the Entresto, The nurse said phone them again if I start falling over. I told her I had a replacement hip, was 70 years of age with osteoporosis and I can't afford to fall over. She wasn't at all bothered. The Cardiac Rehabilitation nurse told me it takes 3 weeks to work and do more walking. My GP says the mid 120's is fine and any lower is dangerous. Who on earth do I listen to? It seems to me I will have to make my own mind up on what is best for me.

[Deejay62 in reply to BSA20]

I was told once it’s over 100 on top and 70 bottom it’s ok and I find it is. You can’t afford to fall and have to look after yourself. Some people don’t have any understanding of your situation, but your doctor seems ok. If it goes low contact your Gp and let them know. Listen to your doctor. You have a good reason why you feel the way you do. I fell at work and dislocated my shoulder after feeling dizzy and passing out. I also have Atrial fibrillation, I’m over 60 once you get to a certain age it’s difficult to recover from a bad fall.

[am1875 in reply to BSA20]

Hi. I was told at Cedars Sinai that many have BP levels between 90 - 100, which is ok in many cases. Cheers!

[BSA20 in reply to am1875]

Regret to say I feel totally exhausted with BP lower than about 110/70. The only thing the Community Clinic Nurse seems bothered about is if I fall over. I have decided I want some quality rather than quantity to my life. Last year I had a procedure for a different health matter which nearly crippled me with pain and I could not venture out the whole of last Spring or Summer and I vowed to myself then I would never take another drug which had terrible side effects.

[am1875 in reply to BSA20]

The nurse’s comment is puzzling. The definition of low BP is anything under 90/60 and not considered possibly dangerous then. 120 is ideal. Many live all their lives with low bp.

[am1875 in reply to Deejay62]

Hi. I couldn’t keep up with how much water I was drinking every day. Should be 2 liters. Yesterday I got a 2 liter soda bottle and filled it up with water. I found that I never drank near 2 liters a day, also drank coffee and sodas with caffeine. It took an effort to drink 2 liters. I may have been dehydrated and not have known.

[Deejay62 in reply to am1875]

I was told by cardiologist that I should drink no more than 2 and a half litre fluid. That includes liquid from stews, gravy etc. You filled up a 2 litre soda bottle and you also drank coffee and sodas. It’s not just water it’s liquid.

[am1875 in reply to Deejay62]

Hi. I agree. When I drank 2 cups of coffee and 1 soda, I poured water out of the 2 litre bottle to equal that amount so that I wouldn’t exceed 2 litres total. I’ll need to consider stews and gravy on certain days. Thank you.

[Deejay62 in reply to am1875]

I think you need to try and drink more water too, for your kidneys, and to keep your blood pressure up. I’m not a doctor, but from pass experiences when I drank too little, fearing fluid overload, I found I felt ill, dizzy/faint, my stomach would begin to hurt and my kidney function would drop. Especially if you take water tablets for fluid retention. It’s a vicious cycle. A normal person is told 2 litres a day.

[am1875 in reply to Deejay62]

Great point!

[am1875 in reply to Deejay62]

Hi. Do you mind saying long you’ve been on Entresto? Thanks.

[am1875 in reply to am1875]

Sorry. I saw your reply.

[am1875 in reply to Deejay62]

I was attending a golf event as a spectator and did a lot of walking. I woke up and had 2 cups of coffee without drinking any water and intermittently walked for hours. I found myself feeling lousy, and unusually tired and some shortness of breath. I realized when I got back off of the golf course that I had not had one drop of water all day, and my bp was really low. I remembered what you said and drank a bottle of water. No telling how many days during my lifetime that I didn’t drink enough water. Dehydration is not talked about a lot but is an important part of one’s health and well being.

[Deejay62 in reply to am1875]

Yes it definitely is. I’ve heard recently they’ve said dehydration can cause memory loss and confusion. I don’t know how true that is, but I do know it can make your blood pressure drop very low.

[am1875 in reply to Deejay62]

Hi again. Do you mind saying what dose you’re on? I started on the middle dose but my kidney numbers were down after a month and I was put on the lower dose. All the best.

[Deejay62 in reply to am1875]

I'm on 24mg/26mg, 1 twice a day. I couldn’t tolerate 2 twice a day I kept feeling faint and dizzy. In fact I passed out at work. I fell and dislocated my shoulder. My shoulder was damaged so badly I now have permanent nerve damage.

[am1875 in reply to Deejay62]

Hi. Do you find that it is helping you by feeling better and having more energy with no shortness of breath? Has your EF increased? I apologize for all of the questions. Will appreciate any reply if you choose to. All the best.

[Deejay62 in reply to am1875]

I was dying, my heart was stopping, so I didn’t have an option. I was put on Entresto in stages because I couldn’t take it with the other medications I was taking so they had to wean me off those first. If Entresto didn’t work they went through options of transplant and adding a defibrillator to my device. I was also sent to Papworth hospital to discuss transplant. On Entresto my EF went up to 15% it recently went up to 23% when dapagliflozin was added to my cocktail. But I still struggle walking and exercising, but I now find I don’t stop as often, because I’m breathless when walking or exercising and also when I’m at rest, my heart doesn’t feel like it’s struggling to work. So yes I do feel a difference. Losing a lot of fluid helps me. All 6 of the tablets I take removes fluid. I have Atrial Fibrillation, and also discovered I have severe pulmonary hypertension, so losing the fluid can help there also. I’m still on death row, as I like to put it.

[am1875 in reply to Deejay62]

Hi Deejay. Do you mean that you’re not as breathless now as before Entresto? All the best.

[Deejay62 in reply to am1875]

I meant my heart function went up, and also yes I’m not as breathless and I can get around. I will always be breathless and as long as I live have heart failure but the tablets have made breathing, sleeping and moving around a lot easier.

[am1875 in reply to Deejay62]

Hi. You’ve been taking Entresto 5 1/2 years? Wish you well.

[Deejay62 in reply to am1875]

With Entresto your body can either tolerate it or not. Some people it makes their blood pressure very low, but also the other tablets we take lower blood pressure, even the water tablets.

[am1875 in reply to Deejay62]

Hi. You’ve been taking Entresto 5 1/2 years? Cheers!

[Deejay62 in reply to am1875]

Yes. It will be 6 years in October. I went through my notes. I can’t believe it either.

[am1875 in reply to Deejay62]

I know what you mean. That’s wowing.

[Familyk]

Hi,I was prescribed Entresto tried really hard to tolerate it but unfortunately for me my BP dropped to 80/50 and passing out. My consultant decided to take me off entresto and I'm now on a higher dose of losartan which is working fine for me. I was disappointed as I'm told it is the wonder drug for HF but alas not all of us can take it. Good luck on your journey x

[BSA20 in reply to Familyk]

Passing out is what I am concerned about as I have a replacement hip and osteoporosis and can't afford to fall over but Cardiac Rehab or the Cardiac Clinic don't seem bothered. At the end of the day I must do what is best for my safety.

[Familyk in reply to BSA20]

You have to weigh it up. You might be absolutely fine. I wanted to stay on entresto but had no quality of life and couldn't work x

[am1875 in reply to Familyk]

Hi. Did you start on the smallest dose of Entresto or the middle dose. Thank you. Cheers!

[Familyk in reply to am1875]

I started on smallest then went up to middle. Unfortunately couldn't tolerate either so I'm now taking higher dose losartan x

[am1875 in reply to Familyk]

Hi. I don’t think there are any studies showing that some of these other “sartans” do or do not have healing or stabilization potential.

[am1875 in reply to Familyk]

Hi. Have you asked your Dr. if there may be another med to cut back on on strop taking so as not to lower your bp too much with Entresto?

[Winter4519]

Funny I M on the same medication was upped a few weeks ago. Now on 49mg/51mg. Although their say take one in the morning and one in the evening I take both in the morning. Only thing i find is puzzling is that I am always very tired sleeping alot breathless. However not sure if it is the medication as I take four different medication on top

[am1875 in reply to Winter4519]

Hi. Have you considered that it might be a high dose taking 2 in the morning causing the shortness of breath? Does the sob get better in the evening?

[Elsabounre]

I have been on Entresto for 1 year now..on the lowest possible dose..50mg broken into 3 pieces..usually I use 2 pieces of this..one mornibg and 1 evening..sone days just 1 piece as BP is still low..I check BP before taking...my main side effect is acid reflux and joint pain..after 1 yr it has gotten pretty bad..I do not see many reports about these side effects..it has however raised my EF from 37 to 45..so it works..but side effects are very unpleasant..

[am1875 in reply to Elsabounre]

Hi. Has it helped in any way besides increasing EF? It’s the first I’ve heard of acid reflux. Did it improve shortness of breath? I started middle dose last week.

[Elsabounre in reply to am1875]

Never had shortness of breath..it was also diagnosed by chance..did angiogram and all is clear so they do not know why I have this..they say maybe viral...acid reflux is now not very active..I am still on lowest dose as before..occasionally instead of entresto I take one third of bisoprolol 2.5 mg ..but not both...any higher dose is too high and liwers bp too much

[am1875 in reply to Elsabounre]

Hi. Sounds like a good formula for you. Sometimes one has to try things to see if they still get the same results as before but feel better. This is only my opinion.

[Elsabounre in reply to am1875]

Yes..you must also be proactive and regularly measure your BP..I keep a book with 3 checks daily which I take to control...

[am1875 in reply to Elsabounre]

Hi Elsabounre. Has your energy level level increased on the lower level? I was started on the middle dose but today my kidney numbers were down and I’m now taking the lower dose. Thank you.

[Elsabounre in reply to am1875]

Yes..energy has improved..I am still not a sporty person..but feel better when BP is normal..my dose is what my body tolerates to keep BP in a normal range..50mgs divided into 3..use only 2 parts per day..

[Sooz34]

I've been on it about 7 months and feel SO much better. It's given me the ability to do more than before and I feel its improved my life no end. I've had no side effects at all ..although reading the precautions I was sure there'd be something! But I'd definitely say give it a go ..its really changed my life 😊

[am1875 in reply to Sooz34]

Hi. Mind saying what dose you’re taking and what specifically improvements in how you feel? Thank you.

[Sooz34 in reply to am1875]

I'm on 49/51 middle dose..I started on the lower one for a month then went up onto the middle dose. I can breath so much better as before it was like I just couldn't get a decent breath in at all and felt like I couldn't walk or do anything at all. I also felt I had a weight on my chest. I can walk a bit better and feel, most importantly, that I can get my breath. Hope this helps a little.

[am1875 in reply to Sooz34]

Thanks for your reply. How does it affect your bp? I’m active but I find that often I can’t take that deep breath. Often I can. Hoping that’s one of the things Entresto will help with. All the best.

[Sooz34 in reply to am1875]

My blood pressure remains 125/80 is.. sometimes a bit higher sometimes lower. I've never had really low BP readings. The entredto has certainly made it easier for me to breath - no doubt at all about that xx

[am1875 in reply to Sooz34]

Nice to hear you’re doing well on it.

[Sooz34]

I hope you are suited to the Entresto and have good results too.

[am1875 in reply to Sooz34]

Hi. Thank you. Are you doing well on the middle dose or have you increased to the higher dosage? All the best.

[Sooz34 in reply to am1875]

Hello ..I seem to be very well on the middle dose..mind you even the lower dose made a difference. I've been on it about 2 years ow and 18 months on the middle dose. I feel my blood pressure has settled well. I'm also on Bisoprolol 5mg, Dapagliflozin, aspirin, and Spironolactone. Generally I feel better than I have in a long time as I think they took too long to diagnose my heart failure in the first place as I had been treated for asthma when it was my heart. It takes a couple if months I'd say, to get used to being on the Entresto so try to persevere if you can 😊

[am1875 in reply to Sooz34]

Good to hear. I think the middle dose will begin to take effect. Cheers.