Since being put on 100mg twice daily I have felt more rubbish than usual, really tired and unwell.
I am 6 weeks post ablation but still cant do much physically and feel really weak if I try to to the slighted of jobs such as edging the grass with a strimmer on my postage size lawn.
Any other people with side effects from the Flec?
I know that feeling when mowing the grass Ian. Fortunately that's all behind me since I stopped taking Flecainide. Why not ask your GP if you can reduce your dosage of Flec, many people just take 50mg twice daily
Also have you had your thyroid levels checked? I was blaming my tiredness on AF, but once when having a blood test at hospital it was discovered mine was underactive. My GP had known this but not told me, he was hoping it was just the effect of taking the drug Amiodarone and would right itself. My thyroid had been fine before taking that drug.
Jean
Hi Jean, having a Blood test next week so will ask if they can do that as well
Thank you for that info about the thyroid - I intend to ask for mine to be checked as there is a possible link with chronic fatigue too. I’ve just completed a questionnaire to be involved in a study of that.
Yes. Felt same when upped to your dose. Ep ordered an ekg and immediately reduced dose to 50 twice a day, Tell doc what is goimg on. Get an ekg. Flecainide has to be monitored by ekg with dose changes or if symptons present.
Jim
I was taking 100mg as a PIP which in the end was taking daily. They increased the dose in hospital and was monitored overnight
Should be monitored a week after every dose increase. Takes time for a dose increase to get into the system. You may feel fine the next day, but not the next week.
Urgent stuff they are great, follow ups not so. The NHS which is under alot of stress due to austerity and strikes at the minute.
I was in hospital on the first day of the last doctors strike so was pleased to get some attention.
GP's dont seem to monitor new drugs like they used to as well
I haven’t been monitored at all apart from doing it myself with my Kardia! I shall attempt to get my surgery more interested in monitoring me though, sadly, I doubt they will. I had some brilliant doctors in the past but sadly, now I really need them, I don’t!! A phone call every two months or so is all I get!!
I have taken anywhere from 50 mg to 150 mg twice a day. For me the higher dose ended up creating more rhythm problems at a higher dose. I had a anterior wall ablation on April 28th at the Cleveland Clinic (I was told after surgery this particular ablation is currently in a trial study there) (they also ablated the floor of the heart) they did not know that was where I had a problem until the surgery. The positive note was when they ablated the area I went into NSR without being cardioverted. I previously had A PVI ablation in two surgeries due to cardiac tamponade. I was initially once again started on 100 mg twice a day, it had to be reduced due to inducing rhythm problems. I am doing fantastic on the 50 mg twice a day and staying in NSR which I had been in persistent afib since Sept 11th last year. Everyone just has different reactions to drugs, I also take 25 mg metoprolol twice a day. I have taken so many different ones and just had to try different doses with my Dr working with me on it for what was therapeutic for me. I certainly hope you start feeling much better and find a solution. It is so frustrating and I COMPLETELY understand.
No problems at that dose level but give it 3 months at least to settle down before taking advice on alternatives.
yes, when my dose was upped to 100 mg I felt awful for a month until I spoke to the cardio who reduced it and gave me dilitiazem instead.
Hope you can get it sorted soon x
Ive been unwell with fatigue issues and no tolerance for physical effort for many years (in my 40's)as well as AF.
I have visited the GP's so many times I have given up. There is something wrong but never shows up. The only thing is its getting worse. The Flec and previously a calcium channel blocker years ago have made me feel more poorly since starting it. I have another 6 weeks before my 3 month review. I am still getting ectopics so suspect the AF will return when the Flec is reduced but fingers crossed.
Thanks for the thought, we all want a bit of peace from this problem
I found an ablation partially worked although the af returned. But I am taking 50 mg of flec and a reduced dose of dilitiazem now and no af at the moment. Have you had an ablation yet?
If it’s any comfort Ian Five out of the 6 meds I’m on to help the heart and ICD I have makes me tired. I am trying a programme of taking some after breakfast and the remainder in the evening to see if it improves my energy levels. Will report in , in a couple of weeks
Look forward to see what happens
Well, two weeks on having reprogrammed when I take the 6 Cardio Meds I am on, to see if any beneficial effect could be gained ( 5 out of 6 taken daily was causing serious fatigue side effects) I am virtually back to the original rogramme. The only major difference noted was that I was better off if I stayed as active as possible. Noticed I felt worse during the past two weeks when inactive so hope I can keep busy for as long as I can. At least I am still here !!!!
Hope you get sorted. After my ablation I was weaned off Flecainide between 6 weeks and 12 weeks. Haven't been near it since-thank goodness!
Hi Magson.
I see you said you were weaned off Flecainide. I had an appointment (telephone) with my EP this morning. I have only ever had 2 episodes of AF and nothing since December 2022. I am currently taking 50mg Flecainide twice a day as well as Apixaban. I asked him if I could try just having the Flecainide as 'pill in the pocket'. He agreed and said I could just stop taking it. I have read this online too but I am very drug sensitive and I'm a bit worried about just stopping. I would prefer to come off it gradually. Please could you tell me how you weaned off. Also, and for anyone else who can give any advice, how big a dose would I need to take if I need it as pill in the pocket. My EP suggested 4 times my normal dose. ie. that's 200mg which sounds huge. I am continuing with the Apixaban.
Any advice from anyone who has experience of PIP flecainide. Thanks.
I was always taking 100mg of Flec twice a day. Never took it as PIP. After ablation, I was informed of a follow up appointment after 13 weeks. After 6 weeks I was feeling good, back at gym etc. I took the decision to lower the dose to 50mg twice a day. At my 13 week appointment my EP was happy to stop Flec completely. He was also ok with me halving the dose at 6 weeks. I would think with PIP it is a bit of trial and error. A 100 mg dose may work for some but others have to take a larger dose. But plenty of info on this forum.Go well.
I first took Flecainide as a PIP, 100 mg and it always ended episodes in a few hours. Then I took 50 mg twice daily and 100 as PIP when the odd episode occurred. As more of those occurred it was upped to 100mg twice daily. Yesterday, I forgot to take the morning one, had a far more active day than usual and my heart behaved very well so just the previous evening one must have been protecting me! But I have chronic fatigue and I have found the Flecainide increases the fatigue and messes up my digestion so “swings and roundabouts” as with all drugs it seems!
Whats your symptoms of CF?
I am absolutely knackered at the minute but had fatigue for many years
Very little energy today. Just taking it very easy watching the tennis at Queens. Yesterday, I did far more than usual visiting a wonderful local community hub open day, where our son heads one of the groups based there. It was all very impressive and enjoyable but cannot manage much today as a result! My husband has become my carer as I can’t stand for very long though I can manage a little walking but not much- I try to walk a very little outside every day but very much less than I used to before the fatigue developed.
I have no problem walking normally but sweat at the slightest effort, even walking the dog now
I couldn’t walk a dog and having done over 2,000 steps yesterday today I can’t do much at all!
I think we have to pace ourselves and just keeping active is sometimes a challenge, best wishes
Its my upper torso that causes the problems, I have walked 10000 steps today but feeling bushwacked now
Hi there, when my Flecainide dose was increased to 100mg, I was not feeling great at all, at all. Keeping my fingers crossed that the ablation continues to work and I don't have to go back on it🤞 Good luck with everything!
Yes, and as I seem to have acquired CF/ME at the same time as paroxysmal AF as a result of the shingles when I had the pain before the rash and couldn’t get an appointment with my surgery for an antiviral, the added fatigue is certainly not appreciated! I’ve just completed the questionnaire to be part of a research project into the fatigue.
I often think I have the same as I have terrible fatigue at the moment.
I saw an locum GP last week who was bombastic to say the least. (Lots of complaints about his manner) He said tiredness and fatigue are the same in his opinion. I didnt argue but thought tiredness is cured by sleep, whereas fatigue is not. I feel more tired when I get up tahn when I went to bed, and I get 8-9 hours of sleep
If you can manage 10,000 steps a day, I doubt you have chronic fatigue but guess we are all different- perhaps you just feel normally fatigued after all that activity!!
Well thanks Vonnegut, another possible one crossed of the list. I am stopping looking on google to diagnose myself 👍😁.
I can walk ok, its just if I try to use my arms pulling, lifting or anything like that, it sets off a pain in my chest/back and I sweat and feel unwell. I have a curvature of the top of my spine and one vertebrae hurts when I press it when I am having these episodes. Its the sweating and feeling unwell that I attributed to AF that puzzles. All blood work is good except I am always low in iron although not anaemic.
I have IBD and you can get spondylosis from this although usually in the lower back. Physiso appointment next month so lets see what they say.
Enjoy the good weather while it lasts
We had a visit today from a friend and his 16 year old daughter and while the men were talking I took the lovely young woman on the fairly long walk I often used to enjoy before the AF and CF/ME struck. It was going to be the short one and I took a stick but it was such a lovely day and everything looked so beautiful that we did the longer one with odd rests for me on the way, especially when my heart went into tachycardia briefly. The most I’ve walked for years but very enjoyable though far from the 10,000 steps you did and I’ve been resting since! Good luck with the physio which might well be helpful.
My husband has some curvature of the spine - he didn’t do the exercises he was given as a child as he found them painful but a young woman we know did and worked on the trapeze for a local circus briefly for a while later!!
Flecainide side effects
Flecainide side effects
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Adizem/Flecainide Side Effects
