Recently I posted about my Cardiologist saying I could come off Flecainide. I was on no other meds). Have been on it since 2010.
I had months ago reduced from 2 x 100mg to 1 x 100mg which was fine.
The last few days I have gone on to taking half a tablet 1 x 50mg.
I have been having a lot of ectopic beats.
My Kardia is saying normal with a pulse around top 60's.
Does anyone know if this is normal when coming off meds and just my heart getting use to the change of no meds.
Thanks
Hi Chris, at my 6 month review after an ablation I was told to stop 2 x 50 mgs and soon after I had a couple of runs of mild AF and a few ectopics, but it soon settled.
Thanks Flapjack that's reassuring
I stopped flecainide 4 months ago which was being used for Arrhythmia and I now get mild symptoms intermittently. I was on flecainide for 3 years. I believe the effects of flecainide last for months as it affects and makes changes to the body which take time to recover from.
Hi thanks for your reply. I saw my GP today and he also said it takes a little while to
I am planning to reduce Flecainide, did you have any more info on 'the changes it makes to the body'?
Hi no didn't get anymore info.
Over the last few days i seem to be a little jumpy in the morning but then seems to settle. Not sure if sleeping on my side and then having breakfast kicks it off
Nice thing about flecainide is that if you try to stop and face problems, or you simply forget for one or more doses, you can quickly take it. The effect kicks in around one hour and peaks around four hours as many people taking it as PIP know.
You need to be aware that your need for Flecainide can go back and forwards over time. There is an emerging field in medicine that, finally, is beginning to credibilise what patients have known, sometimes for decades. I have gone backwards and forwards with it.
Interested in '..back and forwards over time' can you expand a little please?
I am talking about a yearly cycle. In the early days my cardiologist said I could come off it in the summer holidays. It was also good for the body to have a drug flushed out from time to time.
I once restarted, and a few weeks later noticed the irregularities were too high, so I increased the dose and that made it worse. So I went to see my cardiologist. Out here that is easy: appointments are next day. He laughed at my experience and told me I should have known better (true) because too much flecainide can make things worse. He advised me to stop, and restart when I had tachycardia twice in a week.
Two summers ago I had stopped Flec but had some strenuous travel to do and I felt problems developing even at the thought of it. So I started again and only stopped after a week of relaxing walking.
Last summer, I was taking it with a bit of bisoprolol as recommended by Dt Sanjay Gupta. I sensed problems, I cannot remember off hand how I reasoned. I cut the biso and that improved. Recently I have even dared to cut the evening dose. I found that I no longer needed it in the evening, when I was calmer anyway. I know this goes against one of the main aims of drug dosing: to keep a level state. I need it mostly in the mornings.
My guess is that it will work for a while at a given dose, then when it fails I usually cut back, and that works. Then when stressed I can always give a booster. in this case the booster can be small since the body is already preloaded.
Thank you for that. I agree with your reasonings but my cardio would have a fit. He said not a good idea to take irregular doses and so he put me on 200mg Flecainide (only drug) per day and am still taking it 4 years later with no AF - so maybe that proves a point for Lone PAF. I suspect medics prefer regular doses as it easier to monitor e.g. if it works don't change, if it doesn't increase the dose.
I am desperate to get off it though and suspect it may be causing a poor sleep pattern but I stress no evidence on that.
Since coming off it which is now 4 days i seem to be getting lots if ectopics. I am also having a few headaches. Not sure if the headaches anything to do with it. Do i feel better for being off them? I would say no at the moment but that could be just my body changing without the meds. Time will tell.
I am sleeping OK
Yes I imagine it does take the body a while. When I start reducing my Flecainide later this year, if I can just sort the sleep out properly (everything else has been over the last four years), I will be reducing the dose very very slowly particularly the first 100gms as I read here that has a bigger effect than the last 100gms will have. I will be going down in 25mgs increments, each new level lasting at least a month probably more. Hope your ectopics go.
In the history of science and medicine, progress has often come when people have been willing to think the unthinkable. Consultants are often bound to follow conventional wisdom. Being unconventional can get them into trouble. The patient can refuse a medicine but cannot demand it. Therefore it falls to brave patients to go against their doctors. NB I am Not saying you should, I am merely noting that some patients are able to do so with success. It was only a few weeks ago I began to question the steady state approach to meds. I intend to read up on this some more and to discuss it with any scientists who come my way.
In your case, next time you see your doctor, I would present them with a written document. Headings with bulleted points works well. Express your desires. These are valid considerations for the doctor to take into account. Then ask questions such as, *what are the risks of trying a slightly lower dose for one month?* You could then use salami tactics and ask the same question each visit, knowing that you can usually backtrack using PIP.
Thanks for the advice. Pip seems a good idea
Hello Chris45558. I had an ablation last March and while I was still on flecainide (2 x 50mg) I was fine, but having had the post ablation check they couldn't tell whether it had been success as I was still on the flecainide. The post op check showed that I had many ventricular ectopics and a few atrial ectopics, so they stopped the flecainide. Since then I have felt awful. Last weekend I had two runs of tachycardia for about 4/5 hours (always in the night) and the ectopic beats are non stop.
I was content and felt well on flecainide and I still don't know why I was stopped on it. I would have been happy to continue and not have the ablation, but my cardiologist and EP decided differently.
I have read somewhere that keeping on flecainide after an ablation for Atrial fibrillation can cause an atrial flutter, but none of my consultants have given me an absolute reason. Again ?????
I have been told though that it does take a while for the heart to settle as one minute it has an arrhythmia drug keeping it level and then it has to find its own pace???????
My problem is that my lower figure on BP is sooo low likewise my pulse which is never higher than 44 and I feel so tired. Also I still can't revert back to sleeping on two pillows or lying on either sides, especially left side, which is a bit frustrating too.
So Chris, maybe give yourself a while and although not easy try not to worry.
Feel better soon
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