Flecainide got a big eye roll from a... - Atrial Fibrillati...

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Flecainide got a big eye roll from a local Dr. at a clinic..

ggami5 profile image
15 Replies

I have been taking Flecainide for 18 years and have had no side affects... However when I went to a local clinic for a urinary tract infection the Dr. made a serious face when I mentioned Flecainide and said it is not a good thing to be on that drug for so long.... I don't have AF. -- I have a premature heart beat that is not AF ...... So he got me all worried about ramifications of long term. I did cut way back on my Calypso heart beat except when I consume some wine... Who has had any long term lasting affect on other organs or anything with long term usage.... Sept I will go back to my 'new' cardiologist and get some answers...

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ggami5
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15 Replies
jeanjeannie50 profile image
jeanjeannie50

I know that when I last saw my EP he didn't like the fact that I was having to take 2 x 100mg after my third ablation. He gave me the impression that it's not a good dose to be on and would prefer 2 x 50mg. Once all my summer visitors have been and gone I think I'll try and reduce it very gradually.

Jean

jennydog profile image
jennydog

I saw my EP recently and told him of the difficulty I was having getting flecainide from my GP. I currently use 100 as a pip. Apparently GPs can only prescribe it when instructed by an EP/Cardiologist.

I told the EP that I knew that it was inexpensive and non-addictive.

He has decided that if my AF gets worse then I should start taking 2x50 daily and this would probably mean for ever. He has written to my GP and his final sentence is " I will review her in a years' time to assess her progress and I am grateful to you for supplying her with flecainide in the meantime."

psage profile image
psage in reply tojennydog

so ... how did the GP react?

jennydog profile image
jennydog in reply topsage

psage he added it to my prescription straight away. My EP is the best and you would ignore his instructions at your peril. He is also an absolute gentleman who ends his letter to the GP with " best wishes." I was amazed about how much detail he incorporated into the letter about future treatment. He had said to me " I will write to your GP outlining our discussion and detailing these plans. I will copy the letter to you so that you know exactly what will be happening." Just perfect!

CDreamer profile image
CDreamer

Not a nice drug to be in long term use for sure. And neither are any of the other anti-arrythmic drugs. Most are termed 'dirty' drugs meaning they may have undesirable effects long term.

I can no longer take Flecainide as it is a known antagonist for another condition, but I took for about 7 years on and off with no side effects and it enabled me to continue working and doing sports I otherwise wouldn't or couldn't have done.

Risk:Benefit.

Make sure you have bloods done regurlarly - I think 6 monthly was recommended but you should ask your doctor.

Fastbeat profile image
Fastbeat

I had been taking Flecanide 2 x 100mg daily for quite a few years until I saw the new EP on the day of my ablation 2 weeks ago (No bad effects) he stopped them immediately before ablation,I should not have been taking them ever as I also have coronary heart disease, just goes to show cardiologist either slip up or don't check who should not be taking certain drugs,but luckily for me I had no adverse effects.

EricW profile image
EricW

I took it for over ten years without side effects. Problem for me was that it stopped working. So I was taken off it and put on the dreaded amioderone which lasted four years until side effects kicked in. So I had to come off that and now? Well, as I have reported before, just Magnesium Taurate and an anti coagulant. Twelve months on and doing fine. Long may it last!

Good luck.

EricW.

Silver_Fairy profile image
Silver_Fairy in reply toEricW

May I ask which brand of Magnesium Taurate you take and dosage please?

EricW profile image
EricW in reply toEricW

Cardiovascular Research 125mg. I used to take every day but everyone is different. I now take it alternate days because of bowel problems. I also use a magnesium spray two or three times a week and have regular Epsom salt foot baths. You may have to experiment a bit. But do keep your doctors informed if you want to make any major changes to your medication.

EricH

Luludean profile image
Luludean

I was on Flecanaide for ages. I have persistent AF and had mitral valve repair!

I begged to come off it because I had HORRENDOUS nightmares. I had no idea that it was contra indicated anyway.

clarence16 profile image
clarence16 in reply toLuludean

Hi - I have been on it for 6 months and am requesting to be taken off of it. I have gained 19 lbs., have awful nightmares, sometimes get a feeling of disassociation (which is really weird) and am anxious more often then not - this didn't seem to happen at first, but is now happening and is not something I want to live with. It does help with the palpitations, but at what cost? Not worth it. I am scheduled for an ablation in September.

Luludean profile image
Luludean

O my , you are the first person who I have heard say that they have awful nightmares on Flecainide. They were terrible, all about babies I had not fed. Am off it now but sleep completely out of the question for years .Good luck with ablations.

greg35 profile image
greg35

Hi I think like you I have no AF but ectopics I had been taking Verapamil 240 but heart quickly got used to it! My EP did two ablations one Feb and the other May of this year I still am plagued with these blasted ectopics has anyone been cured I am at the end of my tether and losing the will! also has anyone heard of RBBB the EP said he had done some damage but I recovered though if he had to go in again he may do more damage! I know its still eary days but I have no quality of life and will I end up with heart failure as the ectopics are so severe! I live in N Ireland. Any replies will be very much appreciated.

Kind Regards

Ingrid

JaneChapple profile image
JaneChapple in reply togreg35

Greg35 its Right Bundle Branch Block.Your cardiologist should haveexplained:

Right bundle branch block is an abnormal pattern that is seen on the electrocardiogram (ECG), which indicates that the heart’s electrical impulse is not being distributed normally across the ventricles. Specifically, right bundle branch block means that the electrical stimulation of the right ventricle is being delayed.

Might be worth checking it out with him or asking for second opinion via another cardiologist/GP?

My hubby had 2 ablations, second one worked but I think people on this site have more but RBBB should be looked into as well.

JaneCx

psage profile image
psage

check other sources and look at the actual research publication. verify the info here.

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