Digoxin

I had my first ICD implanted in January 2019 and go see my cardiologist next week for an 11 month echo. I'm 56, WAS in great health and very physically active. A little over three years ago some random virus decided to settle in my heart and that in combination with some damage to my heart muscle from chemo 46 years ago put me into heart failure. 

 

I was initially put on Digoxin and Bisoprolol and that brought my EF up from 35% to 40%. I went off of Digoxin a couple times and felt so much better, but then would start feeling really bad and end up being put back on.  Last fall I was quickly going downhill, was put back on Digoxin (was still taking Bisoprolol and she added Candesarten and Spirolactone) and things STILL kept getting worse, EF was down to 30% and my quality of life was tanking so I was told it was time for an ICD.

The morning after the procedure I woke up and all four of my major symptoms were non existent. No more fliud in my lungs, zero cough (I'd had a CONSTANT chronic cough), fatigue was gone and I could no longer feel every single heart beat reverberating through my body. It was heaven.

I'm excited for this supcoming echo because I feel amazing.  Back to working out, dont even think about having an ICD in there most of the time.  

My question to the group is what are your thoughts/experiences with being on Digoxin. I want to ask my cardiologist if I can stop taking it. I know its gotten a lot of bad press which kind of conerns me, and a cardiologist I saw the morning after the procedure when I was in the hospital said "The first thing I'd do if you were my patient would be to take you off Digoxin.

Thoughts?


5 Comments

DIGOXIN

by Gemita - 2019-12-13 05:49:21

A medication that suits one patient may be poison to another.  This was my personal experience with Digoxin which I was put on to try to lower my heart rate further during periods of atrial tachyarrhythmias.  

My Electrophysiologist/cardiologist suggested that Digoxin might be a useful addition to add to my beta blocker, anti arrhythmic meds to help control my rapid heart rates during periods of arrhythmias (predominantly Atrial Fibrillation).  Digoxin I was told while helping to control my high heart rates, would not adversely affect my blood pressure (downwards) since I have naturally low blood pressure and with higher doses of my beta blocker, my blood pressure falls to uncomfortably low levels.

From the start of going on Digoxin I noticed an immediate worsening of my arrhythmias and slowing of my heart rate.  My vision deteriorated and I developed severe gastric (stomach/abdominal) distress and nausea.  My doctor reduced my dose to the lowest possible but this did not help me and after a long battle, I came off the med.  

When taking Digoxin it is important that blood levels of Digoxin are checked at the start of therapy and periodically, so that levels do not build and cause adverse symptoms.  High levels may prove extremely toxic for some of us with for instance clearance problems (abnormal kidney function).  Older people are more prone too to toxicity and the smallest dose should be first tried.

Digoxin I was subsequently told is an old medication and there are better ones to try first.  When taking Digoxin, blood levels of this med need to be carefully monitored to ensure that levels remain controlled and toxicity doesn't develop which is the main reason for serious adverse effects.

The cardiac glycosides may be old but they have good effects

by crustyg - 2019-12-13 11:20:10

Digoxin (and the related cardiac glycosides) may be old - very old - medicines, but they have their uses.

AFAIK, they are still the only medications licensed that are proven to increase the strength of the heart muscle's contractions.  There are lots of other drugs that increase heart *rate*, but actually increasing the muscular strength of the contractions is a real trick.  For someone with post-viral cardiomyopathy, (and post-doxuribicin, or similar, damage) this effect is the most important one.  I believe that there are some candidate drugs in dev/testing that may also achieve this.

However they also have a *lot* of potential side effects and the blood concentration where they work well, and the level at which toxic side effects develop is not hugely different (narrow therapeutic ratio).  So they are difficult drugs to use well.

Medicine, like a lot of human activity, is swayed by fashion and this group of drugs seems to be out of fashion.  We've seen this before in other areas - e.g. metformin for type II diabetes.  Hardly anyone was using this in the 1970s and '80s, and now it's once again a widely prescribed drug with a very useful role in the same disease.

Agreeing with your cardiology *team* to stop digoxin as a trial might be a good way forward, even though it might take a little while to get back to steady-state digoxin levels if a restart is needed.  Really pleased for you that the ICD device seems to have worked so well.

I think, if it were me, I'd try to focus on feeling great, learn the side-effects of digoxin toxicity and leave it alone.  I *think*!

strengthening

by RedRocksGirl - 2019-12-13 11:31:22

Yes the readon the cardiologist told me she was putting me on it was to strengthen the heart muscle. My heart rate has not been as issue - in terms of being low, it did randomly swing high for momentary heart beat episodes but that wasn't ever the main issue.

Initially I responded really well to being on the Digoxin, but the last time that I was off, then put back on it had no effect what so ever as far as how I was feeling, thats when things started bottoming out. I understand her using it to strengthen the heart, I'm hopeful that the combo of the ICD and getting back into an exercise routine that that can kind of keep up the strengthening job. I guess we'll just see.

I do notice a worsening of eyesight/blurriness. And they've never run any kind of blood work to check on its effect on kidneys, which is kind of surprising.

Believe me, I really am focusing on feeling good again!  I feel like a whole new person, it's quite surreal. Makes me realize I was totally running on auto pilot for three years!  Life is good!

Thanks for your replies!  Any others are of course appreciated!!  :)

 

It's a personal choice

by crustyg - 2019-12-13 16:19:08

One of the interesting aspects of cardiac rhythm management versus most other branches of medical treatments (i.e. not surgery) is that the docs don't have to persuade patients to do <x> or <y> - your device is set how they command, and that's it.  In other areas of medicine, however, patients can choose whether they will, or will not, follow the advice of their medical advisors.  It's a humbling moment in medical training when one realises that it's the patient who has to live with the illness/disease and much of the time, all we can do is to help them cope with it as well as possible.  In the UK we call our senior doctors Consultants - historically one consulted them for an opinion about the best course of treatment.  And if you didn't like their recommended therapy and had the money, you sought a second opinion.

I apologise if I sounded patronising when saying 'focus on feeling great': what I had intended to convey was a sense of 'don't worry too much about the 'bad press' of a very old drug treatment'.  If you're taking it without side effects then it *may* be proving useful.  Doing lab tests for digoxin levels may not be necessary if you have reasonable kidney function and no obvious side-effects.  But ultimately, it *is* down to you - but please don't stop taking medication without giving your docs some indication that this is your chosen route.  It is up to them to convince you why treatment <a> is better then <b> - this isn't the 1950s, after all!

But I'm preaching to the expert - you've been through a *lot* in your life, more than I fear I could cope with.

DIGOXIN

by Gemita - 2019-12-14 05:03:01

Hello Redrocksgirl,

I too hope others contribute so that you can get a good mix of views.  What strikes me is that you are so obviously better now than you have been for a long time and that is really what any of us can ever wish to achieve.  I would be inclined not to change anything while this lasts and continue to listen to your body in the meantime.

When I first started out on my journey with heart rhythm problems I was in a very dark place and would have tried anything to eradicate them.  I am small framed and have a low body weight and most of my meds needed frequent dose adjustment to prevent intolerable side effects.  My pacemaker has been a wonderful solution for me and I have been able to stop many anti arrhythmic meds, including Flecainide and Digoxin.  I am only on Bisoprolol now which seems to be very safe for me and helping to calm everything down.

I belong to an Atrial Fibrillation support group and Digoxin is frequently mentioned and I have to say there are so many folks on Digoxin who are doing really well.  My stepfather was on Digoxin for over 20 years and he had a good quality of life and wouldn't go anywhere without his tablets.  I, on the other hand, faired poorly.

It is so difficult for any of us to recommend whether you stay on or stop Digoxin. We are all so individual with different health conditions and what may suit one will just not suit another.  And there will always be so many different views which makes decision making even harder.  I am always guided by what my body is telling me and it has never let me down.  For the moment you have found that "missing ingredient" that makes you feel well - something that many seek and never find.  Maybe you have answered your own question.  You are doing all the right things for the moment and while it lasts, enjoy it.  You can always revisit your decision at a later stage should the situation change.  

Now it just remains for you to receive a healthy confirmatory echo report !!  Good luck  

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