hi. So I eventually met the heart failure team last week, 4 months after the doomster cardiac nurse told me over the phone that I had hf. The hf guy was brilliant and explained everything in plain terms and said that everything was relatively normal although a borderline ef of 45%. It was a relief as the doomster (read my previous posts) had left me thinking I was terminally ill. I started on entresto on Friday and have been feeling v tired since. I’m wondering how long this lasts? No other side effects fortunately. I’m also starting dapagliflozin and Perindopril next week if my bloods come back ok. Is anyone on these meds and able to say what they are like? I don’t have horrendous symptoms of heart failure , I’m just tired. He said that if this combo works then my ef will go back into the normal range and I’ll be discharged. I honestly can’t tell you how reassuring this was to hear but it would be great if you could share your experiences with me about taking these meds. Thanks.
new meds. Are they good news? - British Heart Fou...
new meds. Are they good news?
I despair when I read something as daunting as yourcardiac nurse giving you news about your heart failure over the telphone. I had a similar experience given quite coldly by a cardiologist .It affected my mental health for months.We need to somehow publicise these experiences as they affect people deeply.
Hi. It was awful but not isolated unfortunately. I think that doing things over the phone has become the norm as it’s quick and clears the backlog. Perhaps they have become desensitised to our distress as a way of coping with the job. Who knows. On a positive note the hf guy was brilliant and very reassuring.
Heart failure is such a bad term. I found I had HF and an EF of 20% from my hospital discharge letter. I wondered why I kept being offered a wheelchair. I assumed the 20% was from 100%, not around 60% That was 3 years ago. I am now on Entresto and my EF is up to 60%. I still feel tired mid afternoon, but I think it's just something I have to put up with.
Hi. That’s very encouraging and I’m so pleased that your ef has improved. I was surprised they gave me entresto but I’m more than willing to try it. Heart failure is a terrifying term and when I turned up at the hospital last week there was a big red sticker on my file saying heart failure. I think both patients and health folk dislike the term but we seem stuck with it. Thankfully I’d spoken to you and others when I was first diagnosed and that made me feel better. Thank you again. 😊
Hope you get on OK with it. It does (touch wood) seem to be a bit of a wonder drug.
Fingers crossed 🤞
Hi, sorry to hear of your troubles. I'm in similar situation overall. Dapagliflozin laid me out totally, took it for 3 weeks and thought I had long covid - exhausted, mentally foggy, unable to do anything properly. In bed most of rge time. Within 36 hours of stopping it I was back to 'normal'. I understand it affects some people this way and not others. I hope it works for you
I am also on entestro and dapagliflozin and also get tired in the afternoon and when I first started the dapagliflozin I got UTI’s but now take concentrated cranberry capsules as advice from the clinical pharmacist attached to my doctor’s surgery which seems to have done the trick. These medications made all the difference so although I get tired in the afternoon I tried to schedule my day to do things in the morning rest in afternoons and occasionally go out in the evenings. I’m due to go back to cardiology this month but the last time I went after being on these meds for 6 month my heart showed a slight improvement.
Hi. Thanks for replying That’s good news that your heart is showing an improvement. I read that dapagliflozin can cause uti and I’ll have to cross that bridge when I come to it. I can’t take cranberry or use canestan as I’m on warfarin but I’m sure they’ll recommend something else if it comes to it. Did you lose weight on dapagliflozin, I’ve read that it can be a side effect? Thanks.
I was told there was a possibility of weight loss and the first week I took it I lost 4lb and have lost some weight since but I have put a lot of effort into losing weight just for the health benefits but it’s slow progress so I’m not sure if the medication has helped or not.
Hi, I am on Entresto ( started about a month ago after HF diagnosis in March) but they stopped the Perindopril because it was making me cough all of the time. I felt dizzy and tired on Entresto for the first week and fainted on that hottest day. They have upped me to the middle dose now and I am tired again. Just go with the flow and allow yourself to rest.
Hi , I am on Entresto,Dapagliflozin,Furosemide,Apixiban,Eplerenone and Bisopropal..I was diagnosed with Afib and HF in Nov 21...the Entresto was introduced in May this year and I felt tired and nauseated...I persisted with this pill and my body seemed to tolerate it eventually...and I feel fine now,although the water pill Furosemide was a positive game changer right away... I have complications ,so everyone is not the same....but blood tests should be done to check kidney function etc...Entresto is btw meant to be a worthwhile treatment if tolerated...good luck and try give the meds a chance
Thanks for replying. I found furosemide a bit of a struggle as I was peeing all night. I’m not retaining fluid so I’m not sure why they are adding a diuretic, I need to ask at my next appointment.
I don't have any swollen ankles,so not sure about retaining fluid.Itsccomplicated in that I am now on a catheter...I felt a lot better though with the water tablet....once you stabilize with the meds hopefully you will feel better.Everyone is different with their own toleration to meds. It's a bit of a shock to the body taking these pills,and can take time to adjust mentally and physically....I know how difficult it is...good luck
Forgot to mention..I take the furosomide early morning..seems to wear off by early afternoon.
Furosemide was awful. I couldn’t wait to get off it. I don’t really know what all the tablets I’m taking really do. I take a combination of about 7 different meds and nobody has really sat me down and explained why. I’m hoping that now I’m being cared for by a new team I might find out.
« Heart failure » is a term that needs consigning to history. I’ve been told I’ve got it and it’s scary. One day you’re perfectly fit and the next you’re told something that to most people sounds like a terminal illness. As I understand it, it just means your heart isn’t performing as well as it should. I looked up what it is in other languages and they tend to go for « heart insufficiency”. Much more acceptable! It’s also reassuring that you’re being dealt with so well and can be discharged probably. Thanks for posting about your experience as it does help others in the same boat.
As for the meds, I was put on Bisoprolol and then felt so washed out. I assumed this was my condition suddenly worsening but now I’m off it I can see it was the effects of the medication. I think there is a range of things they can prescribe, so don’t settle for anything that makes you feel worse.
Hi. Thanks for replying. I thought the 10mg of bisoprolol was making me tired but my gp said not. The hf team said they might try and reduce it so that’s good news. Your right about the term heart failure. I thought I was being told that I was dying. Much better to call it heart inefficiency or something similar.
I really wish they’d do away with the term “heart failure”. It sounds so ominous. It literally just means that your heart isn’t working as efficiently as it should. But that could be anything from 99% to 1%. As some have already rightly said, the impact on mental health can be severe, so just throwing it out there without any supporting info is extremely careless.
Hi. Thanks for replying. Your right, I heard that term and my mental health took a nosedive.
Hey. I'm on the lowest dose of entresto and I take dapaglaflozin, ivabradine, bisoprolol, furosemide and warfarin too. I was on perindopril but that stopped as told it can't be taken with entresto. Depending on the strength of entresto you take it can take a little while to get used to the tiredness. I was advised if I have a bad day, like not being about to do much due to say tiredness then don't take the entresto doses for that day. Each case is different. Dapaglaflozin can cause UTIs and can make you urinate more. I've had no issues with this medication. I have dilated cardiomyopathy with an EF of 15%.
Hi thanks for replying. I was told that perindopril was an add on for entresto so it’s strange that you’ve been told otherwise. I’m not sure why I need a diuretic as I’m not retaining fluid. I’m hoping that the fatigue eases off as I’m a bit of a zombie at the moment. 😊
If you look up medication that can't be had with entresto, perindopril is one of them. The zombie moments will come and go I'm afraid but they get a bit more manageable. The dapaglaflozin is more for heart protection than a diuretic but it can induce diuretic side affects. Wishing you all the best
That’s interesting. I’m back at the hospital next week so I will definitely ask about the perindopril. Thanks for letting me know.
What positive news like you my cardio nurse has me dead it’s not too started looking up my echo report online that all 4 things listed are not a deaf sentence my EF 50 mild MR and AF the later I under go cardioversion for next week yet she insisted on using the term heart failure constantly I left my call with her feeling so low her attitude was very cold yet I had read in here how helpful they were , not in my case
Hi thanks for replying. The cardiac nurse I’ve had from the beginning is awful. She always gives emphasis to the negative stuff and the first time I met her face to face I came away thinking I was on borrowed time. I never phone her now as it makes me depressed and I never get given the full picture. Fortunately the new person I’ve seen is very positive and gives me hope. I think that while some people may be clinically good at their jobs, their people skills leave a lot to be desired. My hospital file has a big red sticker on it saying heart failure. It’s like I’m a plague carrier or something 😂
Yep exactly like I am . I asked mine can my cardioversion improve my EF and I am told doubtful by the nurse yet it’s only EJ 50 so in my head it’s just ok still she must have said Heart failure 20 times I started to think are you enjoying this . I asked her is my heart beyond help before I researched and she answered it’s to hard to say yet my echo which she has doesn’t show any real this the end of it lines So I researched it and there is every chance my EF can improve and my mild MR is common my people have it and require no treatment ever .
She sounds just like my cardiac nurse. I hope it’s not the same one!! When I saw her the first time it was after my mitral valve replacement and I asked her about prognosis. She replied that “ it wasn’t a very good diagnosis”. I now know that what she said wasn’t right but she had me thinking that I was going to die. Absolutely rubbish people skills. She told me to live each day like it was my last and various others things. I did wonder why and thought that she was just completely desensitised to my distress. She contributed to me becoming very despondent and depressed.
I also have Heart Failure, I am now on Entresto 24 mg.26 mg, I was on double this dosage but made me feel quite unwell, since reduced to half dose no problems. I was also on dapagliflozin but caused really bad vaginal itching so I chose to stop taking it, it is a diuretic. Please do take into account that we are all different as to what our bodies will tolerate, we can only be guided by the medical professionals. What doesn't work for one may well work for another. Best wishes.
Hi thanks for replying. I read that dapagliflozin can cause problems like that and I wasn’t looking forward to it. I’m due to start it next week after blood tests so I guess I’ll find out. I was on iv antibiotics for 2 months earlier this year and that had similar side effects which was awful. Unfortunately I had to put up with it as warfarin restricts what treatments I can have. Fingers crossed that the dapagliflozin isn’t as bad. I hope you are feeling better now.
Hi Anon, like you I found out that I had HF from a HF nurse, her first visit to me after I left hospital. Her first words were “ so how do you feel about having HF” my wife was really upset as this was the first we had heard about it. Caused months of anxiety which I ended up seeing a Phycologist for months.Anyway that was two years ago now.
When I was first diagnosed I had Dilated cardiomyopathy with AF and an EF of 10-17.5%.
Felt really unwell for a long time.
Once I started seeing my HF nurse team and my dedicated nurse things changed quite dramatically. She worked with me to explain what I had and to get my meds sorted out. After several months I eventually started feeling better.
That was a couple of years ago, my cardiologist put me on Entresto and Dapa last year. I had a bit of a reaction to Dapa but persisted, I did start to feel better after a while.
I had a cardioversion in March which thankfully worked for me and I’m still in sinus rhythm.
I had a scan in June to see how things were going. The cardiologist actually rang me a few weeks after once he got the results informing me that my heart was now pumping in the normal range and it was very good news. No ICD DEFIB required anymore. Not sure who was more pleased about it him or me.
I have my actual follow up this Friday to find out more. I was that surprised when I got my call I forgot to ask about my EF.
Anyway back to your question my experience with my meds has been totally positive. Entresto and Dapa are gold standard meds for HF. So I think a mixture of diet, exercise the cardioversion and the meds have been good for me. Hopefully it will help you.
Hi. Thanks for replying. That’s fantastic news about your heart, I hope that mine improves too. It gives me so much hope when I hear of other people who are doing well so thank you. I’ve been referred to psychology for health anxiety so fingers crossed that will help too. Thanks again. It’s great to hear that you are doing so well.
Hi Anon, something I used to help with the anxiety was an app called headspace. It’s a meditation app which was recommended to me by my HF nurse. Ay first I was so sceptical about meditating. I did persist with it and practised 3 times per day. Eventually i did start turning a corner with it took about a month.I still meditate now. Every night before I sleep I use it to calm down. In fact I go off whilst meditating. Also helps with controlling my breathing when I get anxious. It will teach you some techniques to help with your anxiety. There are some techniques on it which are free. I pay an annual subscription, think it’s less than a pound per week. Give it a go what have you got to loose. It’s for free to start with.
hi, I had my HA 10 months ago and my ef was 38, I had an echo done 2 months ago and my ef is now 60! believe in yourself take your meds and for me I believe that exercise is the key, im now back doing the same exercise as I was pre HA, and ill tell you in those early days I never thought I would! wishing you all the best in your journey x
Hi there, my meds are Entresto highest dose, Dapagliflozin, bisoprolol, edoxaban. I was taken off epelernone as the combination with the Entresto was having a really bad reaction on my kidneys. Something is giving me a cough though and Im not sure which med it is. My cardiologist says my heartbeat has always been weak, but since going on Entresto it is now 'reasonably controlled'.
Hi. Thanks for replying. That’s good news that you are doing well. I also have a cough but I’ve put it down to rampiril which I stopped last week. Apparently the cough can last months even after you’ve stopped taking it. It could be one of the other meds I’m on but I’m not sure. It’s irritating but I can live with it. 😊
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