I was in hospital June 2024 with the above conditions. Ejection Fraction was 10-15% so very serious.
Fortunately I’ve improved since and now EF is 40%
I’m taking Apixaban for a-fib and carvedilol (beta blocker), dapagliflozin, entresto, and spironolactone for HF.
I’m getting some awful side effects:-
Very cold fingers and toes ( already have Raynaulds syndrome). Toes are beginning to turn blue/black. Burning and prickly sensation as well.
Sleep disturbance - mainly difficulty in staying asleep - keep waking every couple of hours.
Taste change - metallic taste when eat.
Dizzy when standing.
Runny nose, dry mouth, hoarseness, and nighttime headache.
Bisoprolol changed to carvedilol early on but didn’t help with side effects.
Having done some research it seems that the beta blocker (carvedilol) is the main culprit for side effects. However I believe this drug is also important in combating a-fib.
If my condition continues to improve - maybe EF to 50% or more (which would be back to normal) - do you think I can stop or reduce dosage of my medication to help relieve the side effects? Or maybe try a different medication. Or take at a different time of day. Do I need cardiologist’s permission to change anything or could I try myself?
My next appointment not until April 2025.
Will I have another test to check if my EF continues to improve?
Does anyone know what happens if you stop/reduce meds (with or without doctors agreement)?
Would you suddenly end up with EF going down and HF symptoms returning, and maybe end up in hospital again?
Thanks for any help.
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hi topsy there are lots of factors to be considered, like is your dilated cardiomyopathy genetic, or other, this time last year I went in to get a general heart check up because I lost my sister to a heart condition call arvc . And was told I’m in hf with an ef of 40/45% and I have DCM but don’t have fibrous tissue like my sister had!! Which is a good thing 🙏🏻. 10 days after my 1st scan the ef had gone up to 53% was on beta blocker, dapagliflozin, candesartan,
I to was getting cold feet and hands, in June had 2nd Mir and my heart has gone back to a normal size and ef up to 56%. With no scaring all the walls of the heart are normal no stretching or thinning. Then was taken off the beta blocker as have a low heart rate when I sleep 37/43bmp.
Now having an ecg in January 2025 to see if the heart is still improving they are talking about removing the candesartan.
My dcm is not genetic it was from being a bodybuilder and taking steroids. There thinking is stop the causes ie steroids and it will go away so far so good.
I would get in contact with the cardiologist and talk to him people have come off the medications but everyone is different.
My DCM and a-fib are not genetic. Cardiologist thinks very likely due to excess alcohol consumption for the past 20 years. Had a number of tests to try to determine other causes but all negative. I also have no fibrous tissue or scarring and my heart has now returned to normal size.
General consensus seems to be if I completely stop alcohol (I have done since last June) then like you with the steroids there’s a possibility of my EF returning close to normal.
That’s why I’m wondering if I can reduce/stop some of the meds in 2025 as I seem to have addressed the underlying cause.
No date yet for a further test of my EF and next appointment with cardiologist not until April 2025 so no quick answers to my queries.
I may try ringing my cardiac nurse to see what they think.
I think the doctors and nurses are brilliant in their understanding and treatment of heart conditions but unfortunately they have no idea of the severity of medication side effects without experiencing them themselves!
Good luck with your condition and I hope the ecg in January shows further improvement.
Back in 2012 I was diagnosed with DCM/HF and my EF was put at less than 20%. I was in a bad way.
But I was one of the lucky ones - the only thing I was diagnosed with was DCM and a slightly leaking aortic valve.
Over the years since then I have been on fairly standard DCM medication and my EF is now about 50%. And as, at the age of 77, I have no problem with significant levels of exercise I do not think I need concern myself with getting it any higher.
Most measures of heart function that the medics concerns themselves with are a lot more technical than this thing called Ejection Fraction. But they throw this figure at us because it is one measure that is fairly easy to understand -it means we go away from our consultation with a single figure that we can talk about.
And it is important to understand that it makes very little sense to compare an EF that comes from an Echo with one that comes from an MRI. The two figures will be calculated in different ways.
I would take the view that if your EF was 10-15% back in June and it is now at 40% then I would stop worrying about it. And when it comes to any decision about stopping (or reducing) the DCM medication - I have been involved with some BHF research into this matter. If you want some more details just ask.
But the one thing I can say about this is very simple - the research was carried out in a large London specialist hospital by some of the top cardiologists in the world. At the end their advice was that if you have been diagnosed with DCM and your medication is working - DO NOT STOP TAKING THE PILLS.
When it comes to your side effects - I am not able to offer any real advice.
Apart, that is, by saying that given the collection of medications you are on it could be any of them that are causing the problem(s).
And as far as I know - very few doctors will have a firm opinion about what time of day you should take your pills. Sometimes the prescription will specify a time and then, of course, you should stick to that.
When it comes to the term daily - maybe a prescription will say 1 tablet 3 times daily. I take a day to mean 0:00 (midnight) to 23:59 (midnight).
Like you I have a bit of a problem with stop/start sleeping. If I go to bed at 10:30pm I might wake up at 01:30am and toss and turn for a bit.
When this happens I get up and take some of my DCM pills with a glass of water and go back to bed. Maybe it helps me to sleep through the rest of the night - it might be something you could try.
When it comes to your current problems the "Toes are beginning to turn blue/black. Burning and prickly sensation as well." should not be ignored. You cannot wait until April to get an opinion on that.
I would call 111 straight away - on the few occasions I have called them I have found them very good. As soon as they hear about your history of heart problems they will probably send out paramedics to see you.
Before ringing 111 make sure you have a written list of your medications to hand. Trying to remember exactly what you are taking in the middle of a tel. conversation is not easy.
One other thing - you do not say what part of the country you live in. There are two sorts of NHS cardiology departments - most local hospitals will have general purpose department. But around the UK there are about 20 (or so) specialised heart hospitals - The Bristol Heart Institute for example. And the UK one with the best world ranking is the Royal Brompton in London - back in 2021 it was ranked as the second best heart hospital in Europe (after one in Germany).
Over the last 15 years or so most of the general purpose departments have become very good at treating HF/DCM. But there are still some patients who might need to be referred to one of the specialist hospitals - do not be afraid to discuss this with your GP.
And do not forget about the charity known as Cardiomyopathy UK (see cardiomyopathy.org/). They have a dedicated cardiomyopathy help line...
0800 018 1024, the lines are open Monday to Friday, from 8:30am - 4:30pm.
I’m aged 72 and live near Newcastle. I was an inpatient at the Royal Victoria Infirmary for 3 weeks last June and have also attended the Freeman Hospital in Newcastle for various tests. I believe these are very good heart hospitals.
I had an MRI in August showing EF of 30% then Echo in November showing EF of 40%.
Agree there’s a lot more to EF than just the percentage figure but for purposes of this forum probably best to keep it simple.
Also agree not a good idea to stop/alter my medication without expert advice first.
I’ll look into seeing my cardiologist privately and will also contact Cardiomyopathy UK and my local cardiac nurse.
Yes - an increase in EF from 30% to 40% is a very good sign. Such a big increase is very significant even though the figures for each one would have been arrived at in different ways.
And in a big city like Newcastle you will have access to specialist cardiologists who know a lot about DCM and HF.
Good luck for the future.
And although there is still over 5 hours to go - Happy New Year from Mike aged 77.
PS - I wonder if Randomslee knows the same guys at the Royal Brompton that I do.
And over the next few weeks or so I hope to be able to do a bit of "analysis" showing how Dr Google comes up with its "Opinions".
I can still remember exactly where I was when I first saw the word Google in print.
I totally agree with Mike don’t just stop taking the medication, Talk to the cardiologist or even see if he or she works privately mite cost a little but will put your mind at ease.
These people that look after us are professionals and I remember when I was 1st diagnosed I went looking for answers on doctors google and scared the crap out my self, I even told my cardiologist how long I had to live 😂😂😂…. His reply was you can see all the certificates and awards on the office wall that’s years of studying and you have diagnosed your self in weeks, That’s when I put my trust in them😂.
And depending where you are in the country look up the best cardiologist department. I did and I’m now under st Thomas in London king college that works with the Royal Brompton in London.
I tried several betablockers but all had bad side efffects so eventually I asked to come off them. I have been off them for a couple of years with no problems and I quickly felt better. My advice would be to ask your cardiologist if you can stop taking any beta blockers. Mine was doubtful at first but I am still here 9 years after my first SCA!
Hi I have dilated cardiomyopathy and mine has become severe causing severe heart failure and pulmonary hypertension. I also have non sustained ventricular tachycardia and I’m due to have an ablation soon. My DCM is genetic.
There’s a possibility by tampering with your meds you might end up reversing all the good work.
You need to speak to your cardiologist and hear what they say. Many people in your situation have continued taking their meds.
Looks like the general consensus is I shouldn’t tamper with my meds without first consulting my cardiologist. So that’s what I’ll do. Will see if I can get an earlier appointment than April 2025 though!
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