Concerned about coming off medications. ..

[Froggy]

Hi everybody. Not posted for a while but have tried to keep up with you all x

I have a concern at the moment which involves stopping my anti arrhythmic, Flecanaide and Warfarin. They have both been my comfort blanket for a while now.

I had my second ablation for AF and also, this time, for Atrial Flutter. My first ablation went well and I felt better than I had for years. Then I had my meds stopped - within a month I was back in hospital with AF again.

My second one has gone really well, the occasional strange feelings now and then but nothing major. This was last December and I had a follow up 3 months later where it was decided that I should stop my meds. I said that I didn't feel confident enough after last time and so my EP said to see him again in September and we can talk about it then.

I am so worried about AF coming back again, I really don't want to go back to having it . Anyone any advice or anything? It would be most appreciated. X

[Hidden]

Hi froggy,I have just come off bosoprolol at second attempt,think first try was to quick.Been on bisoprolol 2.5mgs for about 15 months then dropped to 1.25mgs for 2 weeks before giving up but felt awful so went back on 1.25 for another 6 weeks then tried again, been off them now 3 weeks no symptoms.not been on any anticoags so can,t give advice,but do take it slowly if you,ve been on betas for quite awhile good luck

[Froggy in reply to Hidden]

Thank you arg. I take Bisoprolol too. My dose was 7.5 pre second ablation and was reduced about 6 weeks later because my pulse dropped to just above 40 bpm. On 5 per day now. The effects of the successful ablation seems to have affected my blood pressure as well - going the right way (for me) - down! Too far sometimes I'm sure everything will balance out in the future

[Rellim296]

You don't say how much flecainide you take. I've been dropping mine gradually since an ablation in March and from 150mgs x 2 per day I'm now at 50 x 2 per day. I'm over the moon about this. I had contemplated cutting it to 50 mgs once in the day but have not done so. I have an EP appointment next week and wonder what will be recommended. I have been taking flec for three and a half years and have some side effects from it which have not diminished, although I sleep better than a couple of months ago. It has been said that flecainide can affect sleep adversely. Don't know how I would feel about not taking it. It has to be good to be exposed to fewer drugs and one can always take it in the event of AF.

I'm not going to enter into a debate on warfarin. Someone else can comment!

[jennydog in reply to Rellim296]

Why would you want to come off warfarin? Could you reduce the flecanide slowly and then use it as a pill in the pocket if AF strikes?

I am really interested to read replies to your question as I will be in the same position within months.

Very best wishes.

[Froggy in reply to jennydog]

I remember you being 'done' about the same time as me! What you say makes sense to me. I will let you know how I get on and be thinking of you too Thanks - Joan x

[Froggy in reply to Rellim296]

Hi Relim - I was taking 150 x 2 per day after my first ablation. This was stopped altogether, AF returned and was put on 100 x 2 per day. This made my AF more tolerable but didn't control it 100%. Post second ablation, apart from a couple of blips AF has been kept totally at bay. Thank you for your response.

Joan

[Rellim296 in reply to Froggy]

As Jennydog says - and you seem to be in favour - why not gently decrease the flecainide. Otherwise you won't know if it is the ablation or a combination of ablation and medication that's now keeping you on an even keel. No point in taking pills you don't need. Flecainide is tough stuff. If you don't take it, you could be just fine. It's always there to zap AF if needed.

Warfarin is another matter.

[Froggy in reply to Rellim296]

I forgot to ask you - are you reducing meds on your own or with guidance?

[Rellim296 in reply to Froggy]

Just spotted that. With guidance. My EP dropped 100mgs a day at once. Yipee. After a while I did drop from 100 x 2 to 100mgs at night and only 50mgs in the day just to test the water and it worked fine. I usually wake with AF if it's going to be there - it almost never occurs at any other time. Then my EP dropped me to 50mgs x 2 and I've stuck there and, isn't it good, I've been fine for 6 weeks. I had three little wobbles of not much significance in the first couple of months.

It will be very odd to be able to eat at any time day or night if I'm instructed to give flecainide up. I won't need encouragement! Would be bitterly disappointed if AF crept back right away,

[Mrspat]

Well my views about warfarin are probably just as well own. When I had my successful cardioversion, I was told that one reason for doing it was so I could come off m

[Mrspat in reply to Mrspat]

Sorry continued from above... Come off medications. Didn't find out until later that they didn't include warfarin in that. I felt as though I had been lied to. I would never regard medication as a comfort blanket and warfarin (or any anticoagulant) doesn't even make you feel better or alleviate symptoms.

[AnticoagulateNow in reply to Mrspat]

It wouldn't include warfarin. Warfarin is not a medication for AF, it's an anti-coagulant required because AF is the single greatest risk factor for stroke. And without wishing to rain on anyone's parade, ablation is not a cure for AF. Hopefully the procedure will keep AF episodes at bay for a considerable time Froggy but - you still have AF and you are still at least 5x more likely to have a stroke than someone in the general population without the condition. But of course - whether you take an anticoagulant or not is entirely up to you.........

[BobD Volunteer]

First, don't forget that warfarin is for stroke prevention and nothing to do with controlling AF so don't even think about stopping that at the moment. You could re-visit this in a few months if your Chasvasc score is below one.

Re the flecainide I was on propafanone post my last (of three) ablations and felt just as you did. What I eventually did some six or eight months down the line was to stop some of the tablets . For example I was on three a day (150mg) so left out the mid day one. Then I cut the morning one in half after a couple of weeks, then the evening one. See where I am going with this? Once I was down to half a tablet in the evening it then took me another month or so to pluck up courage to stop that. Simples as Alexandr would say. Not knowing your Flecainide dose I can't tell you what cuts to make but it should be fairly easy to do.

I must stress as I frequently do that it would be totally wrong for any of us to tell you to change your medication.. LOL

Bob

[Froggy in reply to BobD]

Thank you Bob. It is becoming clear that I am not on my own with this concern. I just want to get it right as I dread going back to my very symptomatic AF and don't think I could go through another ablation. Despite that I feel positive really and will face whatever I have to face - just hope it goes well.

[CDreamer]

I am currently in similar position, 2nd ablation Mar after stopping meds too soon after 1st ablation, I ended up in coronary care. I was on 100mg x 2 a day which I reduced to 50mg x 2 day about -3weeks ago and 2.5 mg Bisoprolol x 1 day which I reduced to 1.25 mg and am now only taking every other day on the recommendation of my GP as these drugs can make symptoms of Mg much worse, I have had no ill effects. My very wise GP said it is the stopping suddenly which your body can react to so advised me to reduce very gradually, one drug at a time over a period of at least a week.

So far so good, I am down to taking 25mg of Flec twice a day and once I have seen the EP next week, hope to stop altogether. I agree that unless you stop, what is them point of having ablation? My hope was to be able to be drug free and now it is even more important as the drug regime for Mg is pretty heavy and for every drug you take the chances of side effect and interactions increase. Good luck

[Rellim296 in reply to CDreamer]

Your EP appointment is just coming at the right time for you CDreamer. Do hope you will be fine without flecainide. 50mg in 24 hours is not a lot, so it's looking good.

[Froggy in reply to CDreamer]

Thank you Cdreamer that is very useful. Can I ask what Mg is? Not heard of the abbreviation before except for magnesium.

[CDreamer in reply to Froggy]

sorry, Mg = Myasthenia gravis, literally means muscle weakness, which I have just developed so having got through the AF and was coming back into health, I developed this. It is an autoimmune disease where the antibodies attack the neurotransmitters between your nervous system and muscles, voluntary muscles so skelatol motor muscles, affects facial muscles primarily and can affect the whole body. At present I just have to pace myself and drastically limit exercise as I go all floppy. It has affected my eyes very badly so struggle to see, have constant double vision and cant drive and any movement makes it worse so walking - I weave, I look as though I am drunk. Even as a passenger in a car for 2 minutes means my eyelids close and I cant open them. Quite rare and is treatable but need to see a neurologist and 1st appointment I have been offered is 22/09 so yet again, am seeking a private consultation. Thankfully I have the resources to be able to do this but how others cope I do not know.

Anti-arrythmic and beta-blockers and some antibiotics are known to worsen the symptoms, hence my desire to stop them.

[Froggy in reply to CDreamer]

Oh dear x I thought I was bad getting to feel better then having gall bladder problems that was thought to be cancer. I feel lucky now in comparison to yourself and so sorry that you have to cope with this. Having the resources is certainly a big help but you still have to endure the crap. Keep going, you have certainly helped my perspective, thank you x

[moggdog]

hi froggy. i.know the feeling . im on 1.25 bisop and warfarin . its been 6 months since my second ablation . and the docs are saying i no longer need the meds . at first i bloody hated the things . but ive come to rely on them . and im thinking what if they are wrong ? so i will try to come off the bisop . but theres no way im coming off the warfarin. well.not yet anyway ..... moggy

[Froggy in reply to moggdog]

Thank you for posting this Moggy. It is scary isn't it? My other thought on this is, wouldn't your body let you know if it didn't need the meds any more? Like my heartbeat went low which meant that I needed to reduce my Bisoprolol. Warfarin I understand because it does a different job to the heart meds but what about Flecanaide? Am I in NSR because of that or my ablation? Sheesh, who would be a doctor trying to sort this lot out

[moggdog]

hi frog . well thats the problem. do you trust your doctors ? and im afraid i dont . they dont know enough about a f . or about the stroke risk and they dont have time for it . so anyway i hope yours are diffrent .....good luck with that mate