Hi, sorry for the long post in advance. I have had AF for many years and it has got more frequent over time, most recently being every 7-9 days and lasting from 12+ hrs but I continued to take the pill in the pocket approach because I really am against taking medication if there's an alternative. I was quite fit for my 60+ years, walking and cycling regularly each week. My consultant was fine with my "living with it for now" approach and I was very in tune with my heart. He also said I didn't need to take blood thinners as I only scored 1 on the stroke risk scale.
Fast forward to Nov 27th last year, 7 weeks ago, when I had an ischaemic stroke early in the morning. I'm fortunate to live near a stroke specialist hospital in London so was fairly quickly admitted for a CT scan and subsequent thrombectomy. In the weeks following I was completely exhausted and had brain fog but most of that is going and I'm back to walking and don't feel so spaced out when going outside anymore. The doctors said I was fortunate but that I need to treat the AF more aggressively now. I had already started on Apyxoban blood thinners just after the stroke but have now reluctantly agreed to take 100mg of Flecanide twice a day. I have a couple of questions:
1)Why, if I'm on all this Flecanide now, have I had 2 episodes of AF since? I thought it was meant to stop it. However I did notice they were much shorter, just a few hours, but is this normal?
2)Am I going to be able to reduce the dosage at some point?
3) How does this work long term? I am considering an ablation, mostly if it means I would be able to come off medication, but I've been on this wonderful forum for some time and tbh other people's experiences have put me off the idea in the past as it doesnt seem to be that successful.
I would really appreciate any advice from you all. It's taken me quite some time to write this as my left hand doesnt hit the right keys anymore which is one small change I've noticed resulting from the stroke.
Many thanks
May
Written by
Maymuna
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I am so sorry that you suffered that stroke which just emphasises why we are so keen on anticoagulation.
As far as ablation goes. please consider the following. People who have successful treatment usully don't bother coming back to the forum as they are off enjoyng life. A few of us do because we want to help others. This means that any comments here tend to focus on failures rather than success of which there are many.
Flecainide. This is an anti arrhythmic drug and you are already on 2/3rds the maximum daily permitted dose. The effects can be accumulatve over a short time but since you don't mention how long you have been taking it,----- hard to judge. Will you ever be able to reduce the dose? Far too early to even think about that. Concentrate on getting to the best place with your AF first.
Apixaban. With you history your stroke risk is now very high so doubtful you can ever safely stop that.
Maymuna: I've only been on Flecanide for a week so maybe I'm expecting miracles too soon!!
Just to add to my previous post -- I had 2-3 short afib episodes my first week on Flecainide as well. Then I went almost a year without an episode. Definitely give it at least 2-3 weeks, before drawing any conclusions about efficacy or dosage. It needs to get into your system fully and that can take a little time.
I had an ablation last March after suffering with Paroxysmal AF for around 3 years. I had varying degrees of success with various medications, with Flecainide being the most successful, initially as a PIP then a maintenance dose. The AF always came back though, sometimes after several months, and on other occasions several episodes a day. This was when I finally decided to have an ablation, and I've been free of AF since last March. The only medication I take now is to control high blood pressure and also a blood thinner that I'm assuming I'll be taking for the rest of my life, and in my case I feel an ablation was the right thing to do. Good luck with your recovery.
First, don't let others who suggest you should have been on an anticoagulant/thinner with a CHADS score of 1 get to you and hopefully it will not make others uncomfotable who are not on thinners with low CHADS scores. Given your low score, not being on thinners was the correct decision per guidelines, weighing bleed risk versus stroke reduction rewards. You may have had that ischemic stroke even if you were on thinners, something you will never know. Taking or not taking thinners should be guided by a trusted physician who knows your complete history and not someone without medical training on a forum like this.
As to your questions re Flecainide.
1. Flecainide is not a magic pill. It works completely for some, partly for others and for a small minority, it doesn't work at all. Might be too early to tell how it will work for you, however shorter episodes are a plus and makes sense that the Flecainide is the reason.
2. Starting dose is usually 50mg or 100mg bid (twice a day), so your doctor gave you a standard starting prescription. Often we are also given PIP (as needed) instructions to add some more Flecainde to the daily dose should we have an episode. The fact you seem to convert in a couple of hours suggests you may not need that PIP dose, but should your conversions become longer, something to discuss with your doctor.
I started at 50mg bid and then was upped to 100bid but I didn't tolerate that dose very well. I ended up mostly on 50mg bid which worked very well with few episodes. I even had some success at 25bid. Ideally, you will take the lowest dose that has a therapeutic effect, which may require some trial and error under the supervision of your doctor. With that in mind, I see no reason you should not attempt to reduce your dose to 50mg bid at some point and see if you still benefit.
3. I had my first and second ablation in my mid 70's after a couple of years on Flecainide. To do it all over again, I would have ablated at little earlier because I feel the younger you are, the better you can handle the procedure, the anesthesia and the recovery. So in your case, now may be the time. Not necessarily today or next month, or even this year, but don't wait until your body weakens with age, as it can and don't ask me how I know
My ablation was a semi-success in that my afib burden is better, however I still take daily Flecainide on occasion when my heart feels agitated and I needed Flecainide once as a PIP for a post ablation afib episode.
I enjoyed your excellent and organized comments. I have been taking Flecainide for a little over two months (from the beginning of the diagnosis) and I have also lost about 35 pounds. Do you think Flecainide becomes more effective with weight loss? Thanks.
That's tough having a stroke and I hope you continue steadily to revert back to your previous capabilities like my wife has. I like the saying put in a Christmas card this year..... 'Hope is the name of the bird that sings when the night is still dark'.
I agree with mjames1 the stroke may have happened even on ACs (as I understand there is still a 30% risk) and at least you avoided the bleed risk. I am CHADS 1 and no ACs, my cardiologist is not protesting this preference. Each individual needs a full frank discussion with their trusted medic before taking that decision and not be unduly influenced by comments here.
On AF diagnosis 10+ years ago, I was put on 100mgs Flecainide per day, which didn't stop the episodes but 200mgs (a medium dose) did nb. I did not feel 'normal' for 3 months and after doubling down on it with a Magnesium compound and CoQ10 (as prescribed by my Naturopath).
No problems since then but continue with the Flecainide, supplements and a multitude of Lifestyle changes.
Lastly, on ablations. I turned down the offer. Yes I agree the earlier the better re the body's capabilities to recover but against this you have to weigh up the 30% chance I was quoted for needing a 2nd one (which your body might find tough) and future improvements in the procedure, whilst postponing, that you could benefit from.
How different we all are! I first took Flecainide as a PIP when it stopped episodes in a couple of hours then 50mg twice daily and now that I take 100mg twice daily I have only had one episode around the time I must have been infected by covid ( with no other symptoms - just a positive test) about a year ago. I stopped taking anticoagulants with the nasty side effects they had for me but possibly my fatigue is slightly worse though that might have happened anyway as I am nearly 80!
I’m so sorry you have had to suffer a stroke before being put on blood thinners - in this day & age that just seems archaic (happened to me 20years ago where I was told didn’t need blood thinners.) luckily I didn’t have a stroke.
I’ve been on Flecainide almost 2 yrs and initially I had a cardioversion at the same time as starting it. It did in fact change my AFib to AFlutter. This was ablated but stayed on the drug incase AFib returned. Unfortunately recently it has returned again paroxysmally. So have your doctors checked what rhythm is breaking through? As to reducing it I guess will only be known in the future & what happens with your future treatments. I hope you have a Dr now that is up to date regarding AF. Best of luck & try to keep active
I echo what other have said about the stroke, could have happened anyway. Unfortunately as AF tends to progress it is likely that you will have to continue the Flecainide indefinitely and even increase to maximum dosage. Unless, that is, you opt for ablation when there is a very good chance that you can come off it altogether. I had been on Flecainide for nearly 20 years progressing for minimum to maximum dose. I finally opted for ablation 8.5 years ago. Came off the Flecainide the day before the procedure and haven’t taken it since. In all that time I have had two brief episodes of AF. I have stayed reasonably fit, walking every day and am not overweight all of which helps. I enjoy a glass of wine every evening and am so grateful for the ablation which really did give me my life back.
If you do opt for ablation try to find an experienced EP who carries out lots of procedures which increases the success rate.
I'm under the consultant at Barts, Ross somebody, and hope to see him soon to have a better discussion than the last 2 annual phone calls gave me. I really appreciate all the helpful replies so far. Thankyou.
My successful ablation was carried out by Prof. Schilling of Barts. He and his team have an excellent reputation. If you decide on ablation you would be in very good hands.
I started on flecainide 50mg 2x day along with metoprolol November 2022. first 3 months continued with afib episodes though less frequent (had been every few days) they then stopped completely March 5, 2023 so have now been 10 months afib free, so I suspect it may need time to build in the system especially if it’s only been a week for you. Also been on Eliquis since 2019 when I was first diagnosed with PAF( I was 67). I’m now 72. I also hate taking drugs but this particular cocktail is doing the trick for me. BTW, very sorry about the stroke hope you are doing alright and don’t have to go through that again!
Thank you for your comments. I am on Flec. 100 mg twice a day for two months and have lost 37 pounds. Do you think Flec. (or any medicine) becomes more effective the more weight one loses?
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