I've recently been diagnosed with Mil... - British Heart Fou...

British Heart Foundation

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I've recently been diagnosed with Mild Cardio Myopathy & would welcome some advice about meds.

Moldova1234 profile image
12 Replies

I'm new on here & wondered if anybody can give me some advice? I've been told I'm suffering from Mild Cardio Myopathy with an Ejection Fraction of 56% ( MRI Cardio heart scan back in July 2018) I've been put on Bisoprolol 2.5 mg daily & was recently asked to start a Statin Simvastin & and Aspirin daily + Rampirol daily although for the last month I've only been taking the daily 2.5 mg. The Bisoprolol makes me dizzy like I'm about to faint sometimes & also gives me a pressing tight feeling on my chest plus at times makes me feel slightly breathless so I asked my Cardio if I could reduce to 1.25 mg. He replied 'why fix what's not broke' & suggested I stay on it for another month until I see him for an appointment but after another 10 days of ill effects I've started cutting the 2.5 mg pill in half & just taking 1.25 daily.I feel better in terms of having more energy & don't feel dizzy or the tightness in my chest but feel vulnerable & anxious as I'm thinking something could happen to me now I'm only taking the 1.25 daily & wonder if this will improve my condition & ejection fraction etc or will it get worse? My cholesterol was just under normal at 4.8 but because I was identified as having 'moderate plaque/calcium' in my coronary arteries the Cardio said damage has already been done & the statin would help to prevent more build up but so far I've been reluctant to take it in addition to the Bisoprol - I also haven't started the Ramoiril or Aspirin as I'm very nervous & anxious about starting all these pills as I know once you start them you'll likely be on them for life & the ill effects of just the Bisoprol has scared me into anticipating the ill effects I'll get if I start taking the additional Asirin, Simvastin & Rampiril - do I really need all these pills & what would anyone advice I do?

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Moldova1234
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12 Replies
Prada47 profile image
Prada47

Hello

I believe your EF is "Normal" I have always been told 55% is around the Normal mark. I can't really comment on the Bisoprolol as I take 10mg with very little problems. My Pulse is around the 55/60 Bisoprolol does help with my ectopic beats it kind of levels them out. You maybe would benefit from a chat with the BHF Nurses they are the guiding light on these matters.

Best Regards

Moldova1234 profile image
Moldova1234 in reply toPrada47

Apparently 55% is normal for an echo but on an 'MRI' it's 59% minimum I believe? It was on an MRI that I got that percentage for EF

IanMK profile image
IanMK in reply toMoldova1234

I would question whether it is possible to measure to that accuracy. My EF was down to 25% a few months ago but is back up to around 50% after treatment to control a high level of ectopics.

I would recommend persevering with the medications as prescribed as they often take some getting used to (I take 7.5mg of Bisoprolol). You need to have confidence in your cardiologists.

Although I am not medically qualified, my understanding is that the Aspirin is to reduce the stroke risk (although other medications tend to be used in preference nowadays). Again, I would advise that you don’t ignore the risk of having a stroke.

Prada47 profile image
Prada47 in reply toIanMK

Hi Ian

I have lots of ectopic beats Cardiologists words " Fairly Frequent " out of curiosity what treatment did you have ?? mine increased Bisoprolol to 10mg and Candesartan to be increased to 32 mg. Thanks

IanMK profile image
IanMK in reply toPrada47

Hi Prada47

50% of my electrical activity was ectopics which led to LVSD & HF. I had a cardiac ablation back in June. This didn't have an immediate effect so I was started on Amiodarone to control the rhythm. I stopped taking this a few weeks ago. Although I'm taking Bisoprolol (and Ramipril), I am not aware of it having any effect on my ectopics.

I am now playing a waiting game to see if the ectopics return as the amiodarone wears off. If they do, I don't want to revert to the Amiodarone so a pace & ablate may be the next option.

Prada47 profile image
Prada47 in reply toIanMK

Thanks Ian

I do suffer from a lot of Ectopic beats and I have LVSD with Moderate Heart Failure 40 % EF Cardiologist who put in the stents, has passed me on Heart Failure team to see what to do next. Stents to my LAD didn't improve my EF and has made my Ectopic beats more frequent. I am just happy that they are trying to sort it out !!! BP is down to 97/58 and pulse is around 40 bpm with 10mg Bisoprolol, but I feel relatively good just a little light headed at times !!

Pommel profile image
Pommel

Dear Moldova, I take bisoprolol, candesartan and eplerenone for heart failure. My EF was much lower than yours but they started me very slowly on bisoprolol 1.25 for at least two weeks before upping it very gradually til max dose of 10mg, gradually bringing in the ramipril (which was changed to candesartan due to the cough!). These drugs take a bit of getting used to in my experience and make you feel pretty odd but I am fine now on the max doses and my EF improved, which I'm pretty happy about! Maybe it's just a little bit of teething problems and you'll settle with the drugs. I would take the advice of the cardio team. I hope you'll feel better soon!

Moldova1234 profile image
Moldova1234 in reply toPommel

Hi Pommel

Glad to hear you're coping well with the meds & that your EF has improved! I've heard good reports about Bisoprolol improving EF but the 2.5 mg daily was having an ill effect on me - I've recently had a follow up MRI 4 months after my first one & I'll see what the results are with these latest one to see what to do next with regards to going back on the 2.5 or staying at 1.25 I'll probably have to start taking the aspirin, rampiril & daily statin simvastin soon as I've been advised to do

Picass profile image
Picass

I have struggled with taking the tablets I have worried myself to death about side effects and spent hours googling them and I think this has hindered my progress.some one on here said try to think of them as vitamin tablets for the heart and I am going to try and do that in future.

Sim22 profile image
Sim22

Hi Moldova, I’m a medical Microbiologist recently diagnosed with heart failure , atrial fibulation and scaring possibly sarcoidosis.

When I was being investigated I told my colleagues to just diagnose me , give me a treatment plan as I don’t want to be involved I’m a patient and there is no requiement explain in detail

I’m rather clumsily trying to explain my way of dealing with my illness is just to follow the plan, I’ve done no academic reading I’ve just remained positive.

I’m on a three tablets daily plus I’ve had a pacemaker implant eight weeks ago. I’m still feeling crap but my friends say I’m not looking so grey and I’m not sweating as much.

Keep off google (there is good as well as a lot of crap). Follow the treatment plan and feed back to your medical team, get them to explain the role of each drug as it takes a while to acclimatise but do take all the meds.

I’m no expert but don’t worry about the percentage of EF etc concentrate on being well and being the old you 😃😃

Brandibell profile image
Brandibell

These are a standard package of drugs.. I was put on 1:25 rampril/1.25 bisoprol/aspirin/statin 80mg. (Mild LVSD/LBBB hole in heart). Within a month of coming out of hosp I came off rampril the side effects were horrific. Bisoprol I cut in half to 0.62mg GP says it is fine. Aspirin no more. Statins I ended up with a deranged Liver they got cut down to 20mg which again I cut down to 5mg as I cannot tolerate tablets..As long as your GP is aware of you cutting them down there should be no issues..and if there are then they can offer an alternative tablet.. you have to do whats best for you at the end of the day..it is how you function and i say anxiety can be brought on through taking these tablets rather than not doing.. if you feel okay then so be it.. keep going and try not yo worry.

Shar28 profile image
Shar28

Hi, have you discovered Cardiomyopathy UK? They’re a charity with a website and their own nurse-run helpline. They’re fantastic resources. Their introduction pack is well worth sending off for too. Here’s the link

cardiomyopathy.org

The “golden” trilogy of meds for cardiomyopathy are an ACE Inhibitor like Ramipril or Lisinopril, a diuretic such as Spironolactone and a beta blocker such as Bisoprolol.

Taking these worked really well for my husband, improving his EF from 10-15% to 25% in just a few months.

For information more tailored to you I’d suggest contacting the Cardiomyopathy UK nurses.

Best wishes.

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