When in first-time sustained AF this year, I was prescribed Flecainide in an attempt to return me to sinus rhythm. This did not work and subsequently I was given a DCCV which I’m pleased to say did the trick. Following the consultant’s recommendation, I am now taking Flecainide (50 mg twice a day) to help maintain sinus.
My question is: how dangerous is this drug? Like many, I’m not keen on taking medication unless absolutely necessary and have read serious warnings about Flecainide, particularly if taken over any period of time. However, I’ve also seen on this forum comments from those who have been taking it beneficially for many years.
I had thought it was common practice to have an echocardiogram before prescribing the drug but I was told that it would be better for me to have it after the cardioversion. I have one coming up next month.
I’d much appreciate if anyone could help me understand the different opinions and responses. I have a meeting with the consultant in late December so I’ll be able to discuss it then but, in the meantime, I am a bit confused.
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Sambaqui
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Flecanide is not recommended for anyone with structural heart problems but is very effective for many , including myself. I have taken it for years and see it as part of my life in the same way I take blood pressure tablets, anti coagulation ,etc.Regular blood tests reassure me that all is well in terms of kidney and liver function,which I would have anyway being on anticoagulation.
Thanks very much, wilsond. I'm glad and reassured you've found it effective over many years. It seems the structural condition of the heart is the main issue of concern. all the best
I have been on Flecainide for 30 years and have continued to take it even after a number of ablations.
My quality of life has continued to improve since my last ablation 4 years ago, even the ectopics have almost disappeared.
I am reluctant to stop the Flecainide using the adage “if it ain’t broke don’t fix it”.
In all the years I have been taking Flecainide I have been unaware of any side effects.
I am now 74 and have no concerns regarding taking Flecainide for the rest of my life.
If your consultant thinks it appropriate for you to continue taking Flecainide then you should accept their advice.
Oh yes I still take an anticoagulant every day. As my Dad, Grandfather and Grandmother all died from a stroke I am given a degree of comfort by taking Warfarin.
That's good to hear, Pete (potty or not). Amazing you have been on Flecainide all that time and great that you continue to improve after the last ablation. Long may you continue!Thanks for responding.
Flecainide has been no problem to me over 7 years. Yes, it is a powerful drug but it is also a relatively old drug with a proven track record. At the outset I told myself I would wean off it after 6 months but my cardiologist wasn't keen and I needed more time to adopt beneficial lifestyle changes.No, it doesn't work for everybody particularly I understand if you are over 70 when you start with other heart defects.
You are on a low dose, which for me didn't stop AF so I had to go to a medium dose 200mgs/day. I have just had my annual blood test results and all fine apart from low creatinine - any suggestions from the better informed are welcome 🤔.
I'd like to think - as you did - that I could come off it after a while. Fortunately, I shall be able to discuss it with the cardiologist in December. Reassuring that you have taken it for seven years and at a higher dose with no ill effects. Thanks for sharing your experience.
I don't know the length of my QT interval but assume it was checked at the time of the cardioversion. It's great that Flec had such a positive effect for you, and that it has sustained for four years. Long may it continue.
Hello Sambaqui, the great news is that your heart must be in normal physical condition to be prescribed Flec. As my AF was quite asymptomatic, I hadn’t realised that I was in AF & it caused a lot of damage, much of which fortunately repaired once under control. For the first 18months & 3 cardioversions I had no access to Flec - didn’t even know of its existence. I was a little concerned at first when prescribed but trust my cardiologist & gave it a crack. I’m not aware of any side effects other than some absolutely bonkers dreams, which amuses me to be honest. Maybe the need for an afternoon nap too (to the amusement of the lads in work), but that might be me reaching my late 40’s? 🤦♂️😂Stay strong. 💪
Thanks Steve. I've also been dreaming a lot. Not exactly bonkers but I did with much effort win a marathon in my sleep last night (not something likely in my awake life). One of my concerns was that I didn't have an echo before the cardioversion to check the condition of my heart. I did have one four years ago, which was fine. Still, I guess it must have been considered "good enough" for the procedure.
Congratulations on your victory Sambagui!😂 I would assume/hope that your specialist must be confident that your heart is in good enough condition still? They know the signs & in my experience if there’s any doubt, they run tests. I distinctly remember mine justifying his decision on base of condition & improvement when prescribing this, so took from that (& that only specialists can prescribe it) it’s not done lightly. Steve
I have taken Flecainide for 14 years with no problem. Before my ablation I was on 150g twice a day. I now have 50g twice a day for a small occasional flutter. Everybody is different but it has definitely helped me. I have liver and kidney checks twice a year. Good luck.
I’ve been in it three years, seems fine and keeps the wolf at bay I think, I had ablation nearly two years ago.im reluctant to ask cardio why should I take it now, as i don’t want to upset apple art as AFIB is aegulSue
I know well that feeling of not wanting to ask too many questions when things are going well.Leave well alone. It's been good for me to ask a question and get so much reassurance from others on this forum, including your good self.
Ok, I am bucking the trend here! I took flecainide for a few years as a PiP alongside 1.25mg bisoprolol. 200mg at the first sign of AF and it always put me back in NSR. This past year I have had other serious health problems and in the early days my heart went haywire, I was getting multiple episodes of tachcardia and AF, and my doctor suggested going on 50mg flecainide twice a day and 1.25mg bisoprolol. I did that for a week or so and my heart calmed down drastically, so I stopped the flecainide and I have been fine, my last AF episode was 9 September. I am still taking the bisoprolol (unfortunately) because when I tried Metroprolol it didn't work at all. But my plan is to come off that too eventually as I have symptoms, shortness of breath and lead boots on even 1.25mg. I should stress that I don't ever interfere with my other medication, Amlodipine and anti-coagulant.
Hi Irene, I guess your experience highlights the importance of listening to our bodies, and to our symptoms. I'm glad that stopping the Flecainide worked for you and hope it continues to do so. Like you, I would prefer not to be taking this kind of medication forever, though as others reflect in their posts many find Flecainide to have been very beneficial. I guess treatment is an experiment in which we need to pay attention and keep an open mind.
If AF became a problem, I wouldn't hesitate to go back to daily flecainide. I am just mindful of my late elderly mother whose new doctor looked at her list of medication in horror and took her off all bar two. My mother had been religiously (over) dosing herself for years and her old practise just renewed her prescriptions without checking or review. My friend has recently been diagnosed with considerable heart damage after taking excessive blood pressure medication for far too long - it was meant to be a temporary measure to reduce sky-high blood pressure. I think being proactive without being foolish about one's own health can only be a good thing.
Can you explain more about the heart damage excessive BP meds caused? I wasn't aware that something that is supposed to help the heart could actually cause damage. I thought too much of a BP med may cause low blood pressure, resulting in dizzyness, weakness, fainting, etc.. but unclear about structural heart damage from excessive BP meds. Thanks
I am so sorry, I didn’t mean to alarm you and should have made things clearer. Hers was a very unusual case. Her blood pressure hadn’t been checked for some time and she went for eye lens replacement which they refused to do because her blood pressure was so high. She had an emergency appointment at her doctor and was put on several types of blood pressure medication which obviously did the trick. Then Covid kicked off and she was never checked again until very recently. And I am not medically familiar with all the terms she used to describe what is wrong but I will try and find out a bit more and come back to you. In the meantime please don’t stop you blood pressure medication!
I was on it for a few years. My experience is that it affected my eyesight and made me gain weight which, despite efforts, I couldn't lose during that period. When I stopped the medication, my weight suddenly dropped off. However, I feel it helped alleviate a-fib episodes during that period.
Thanks, Snowgirl. This is the dilemma, isn't it? Positive impact of the drug vs negative side effects. I'm feeling my eyesight may be affected, as well as low energy and fuzzy head. However, being sure these symptoms are Flecainide related rather simply age and life is hard to judge.
I’ve been on Flecainide for almost two years. I have lots of side effects, but they don’t really have anything else to offer me. Ive lowered my dose to 25/50, but still with problems. I have hair loss, memory problems, weight gain, etc plus more. Ive only had Afib once, so I’m hanging in there.
I am so glad you asked this question because I was thinking of asking the same question. I'm one of those lone afibbers. I'm 68 but was in excellent health before I was diagnosed with Afib a little over a year ago. Never took any drugs my whole life except for the occasional antibiotic. Until I realized something was wrong with my heart and I wore a Holter monitor and found out I had A-fib . And just like Afib seems to do it's gotten progressively worse. I was on propafenone for 2 months which really helped a lot - after 2 months I had one breakthrough afib episode that lasted 10 hours but it got rid of all my ectopics, however it caused a bad rash on my back so I went off it last week and now my doctor prescribed Flecanide 50 mg twice a day. He told me to wait a week or so til the rash has cleared up totally before taking Flecanide but may start sooner as past few days getting Afib every early evening. It is not lasting so long 30 minutes or an hour or so but last night it actually came back 2 hrs later. Got rid if it by drinking ice cold water. Only wished that worked every time! And I don't know if this is a blessing or a curse but I could tell the second I go into afib so I'm very aware of it which gives me anxiety. The only other good thing is I very rarely feel unwell when I have it so I can carry on and do everything normally nobody would ever know my heart is going crazy inside my chest. Also I was against taking a blood thinner but I finally started a couple of weeks ago with Xarelto I had tried Eliquis when first diagnosed but it upset my stomach too much. Also, like you I don't like taking drugs but sometimes there comes a time in a life when I guess we just have to. Reading this post made me feel reassured as I'm picking up my prescription for Flecanide today. I have to say I have learned so much from reading the posts on this forum. As a social worker who listens to people's problems all day it's sometimes necessary to vent about your own problems also.
I've often found a question from someone on this forum answers a question I had myself, or simply reassures me. I'm glad you found mine useful. Like you, I was not used to taking any kind of medication before Afib struck, so it all came as a bit of a shock to find I may be on it for life. Still, as you say, maybe there's a time in life when we have to see things differently. In the UK we have a national healthcare system but the difficulty (particularly now with insufficient funding alongside covid) is there can be long waits for medical appointments. I'm hoping I can maintain a calm capacity to notice the impact of medication on both AF and my body as a whole. Not easy, I guess. All the best to you.
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