Does myocarditis have poor prognosis - British Heart Fou...

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Does myocarditis have poor prognosis

JS1001 profile image
7 Replies

26yo female.

admitted to hospital for 4 days with elevated troponin of 360 and chest tightness. Ecg, holter monitor and echocardiogram all normal, with the exception of very small pericardial effusion.

I was diagnosed with acute myopericarditis and was discharged with x2 colchicine for 2 week s, to continue with x1 for a month. The cardiologist didn’t recommend any follow up.

I have been doing research and see that the survival for 5 years is 50%. This was on the cleaveland clinic website for myocarditis so a reputable source. I am terrified. Has anyone got any information on this?

Is there a difference between myocarditis and myopericarditis ? Is it worse prognosis to have both?

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JS1001
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7 Replies
Milkfairy profile image
MilkfairyHeart Star

Hello,

I had myocarditis more than 10 years ago and I made a complete recovery.

I really suggest you try not to Google.

Dr Google's consulting room is notoriously alarmist and unreliable.

I suggest you give the BHF helpline line a call and speak with one of the cardiac nurses.

bhf.org.uk/informationsuppo...

Another good resource of information is Cardiomyopathy UK .

They also have a helpline too.

cardiomyopathy.org/about-ca...

My other advice is for you to rest, rest again and then rest even more.

Blearyeyed profile image
Blearyeyed

Sorry to hear that you suffered this condition , but the good news is that it sounds like a case that has been treated well and you've been able to go home with basic treatment which means your prognosis is very good.These comments that include percentages are often written on round up posts about health conditions, and although they are understood as being positive by medical professionals, they can often be a bit confusing or cause anxiety for people whom aren't used to understanding survival figures, to be honest I think including them does more harm than help.

A prognosis of 50% of people surviving 5 years after myocarditis does not mean that a person whom has had myocarditis will only have a short time to live.

It just means that 50% of those people whom had myocarditis lived longer than 5 years after myocarditis which is a positive outcome.

50% may sound scary but it's worth remembering that myocarditis isn't common , and the majority of people whom get it for reasons other than having a one off infection are often older, or they have other long term or chronic illnesses that make their bodies weaker , this was the cause of them developing myocarditis in the first place and the other parts of their medical history affects the overall figures as well.

If you read back through the Cleveland Centre post , however, you will see that the majority of information about Myocarditis is correct and very positive.

As they point out, this inflammation of the heart muscle can happen for many different reasons , as part of an infection or in people whom already have other illnesses whom might find inflammation harder to clear without medical help.

In many cases the myocarditis will be mild and if treated quickly people can finish their course of treatment and live Long lives afterwards with no need for further treatment just by living a healthy lifestyle that all of us should try to follow.

In cases when it may have caused some additional weakness, or things like Arrhythmias, people may require daily medication to help to manage those symptoms along with living a healthy balanced lifestyle and again have a long normal life.

In rarer cases , if it did cause more severe problems, or long term symptoms of another heart problem, people can still get back to having a long life by having an operation or a device like a pacemaker.

Anyone can develop myocarditis for various reasons , many like infections are hard to avoid , but if you are younger or live a healthy lifestyle the chances of you suffering a mild case or making a full recovery from it are high.

It sounds like your cardiologist has decided that your recovery is going well and you don't need additional treatment at the moment , and any slight pericardial effusion will not be an issue as you recover and finish your treatment and slowly build your strength back up again.

One of the best things you can do now is think positively and try to reduce your Stress or Anxiety as these things always make you feel worse even when your body is getting better.

Take care , Bee

Identiy profile image
Identiy in reply toBlearyeyed

When I was 15 - 59 years ago - became very ill while running a cross country race following the flu several days before - heart was racing and irregular. No one knew what was wrong with me . Rested and seemed fine after around one month.

55 years passed then four years ago, had a cardiac MRI which showed a significant area of scar tissue in the wall of my left ventricle. My coronary arteries are fine and the only logical reason for the scar tissue and an observed reduced ejection fraction of 51% was the myocarditis from the flu all those years ago.

In the interim I played international rugby and was, and still am, very fit, even with a lowish EF.

Suggest you see a cardiologist for advice before starting exercise, as rest in the initial period is important.

Elsabounre profile image
Elsabounre in reply toIdentiy

An EF frim 50 is considered normal...rates going frim 50 to 65..in an ideal world...you are obviously fit..because of scar tissue the heart may not be as supple in it's contractions...but with an EF like you have ..maybe your doc will give you some meds to regulate or slow the heartbeat as it may relax the heart a bit..sounds to me like you should not worry too much...

Stuartc100 profile image
Stuartc100 in reply toBlearyeyed

"50% may sound scary but it's worth remembering that myocarditis isn't common" - Sadly not in recent years and we all know why!

roughquest profile image
roughquest

if it’s an American source on Google, it’s after your money and will tell you the end is near 😉

In my experience the NHS pretends Myocardial symptoms don’t exit. Have a read through Milk Fairy’s posts (in the past) loads of useful information 👍

fishonabike profile image
fishonabike

"Prognososis" is based on data and often expressed as statisticaly likelihood - you are an individual, not a number, and your future is influence by a large number of variables which can't be shown in a general statement of prognosis. Before being influence by statistics it is helpful if you can understand how they are worked out and used - if that's beyond you (and it is beyond most of us!) view them all with caution!

you might want to see some of the info from the Myocarditis Foundation: myocarditisfoundation.org/

and Myocarditis UK have their own Fb group: myocarditisuk.com/info-supp...

Recovery can be slow and it can feel like you will never get better, but please be gentle and patient with yourself, you can not hurry this along.

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