Are there alternatives to Flecainide

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

I had ablation following flutter but since ablation have been quite unwell. I did go into AF during the procedure.     I didn't have another AF episode for 18 months but  ealier this year it happened again sorted out by amiodarone drip in A&E  and since I have been on Flecanide and bisoprolol.     6 months later another repeat and increase in Flecanide but my symptoms are worsening all the time.  Lots of internal raw pain originally in stomach area but in last couple of weeks in heart and chest area too and I am so weak.  Its hard to work out if its the Flecanide causes the extra symptoms but I keep having misfires so it seems I need the flecanide.    Just wondered if there were alternatives. 

1 like, 22 replies

Report

22 Replies

  • Posted

    Hi Kate

    I am taking Flecainide as well and feel I have all the 'Uncommon' unpleasant side effects in the leaflet which comes with the drug but the Doctors just won't listen to me and I'm reaching the point of thinking the cure is worse than the disease.

    Have you any update on your condition which you can share and which might help me make the Docs see sense and acknowledge that perhaps I could try an alternative ?

    Hope you're over the worst now

    Report
    • Posted

      I'm a bit lost today trying to find the threads on this conversation. That's definately a side effect!     I thought I had put somwhere a recent update but basically  - I am awaiting a gastroscopy which may or may not tell us more about my apparent - digestive link with the AF triggering i.e it can trigger spontaneoulsy in middle of night or when I go to eat or even sip water on occasions.    If it is negative then I intend to ask for a 2nd opinion re the heart meds.    I don't know which one is causing the problem or whether it is the combination.   Apixaban is a new drug so who knows re that one.   Bisprolol could be a factor.   Flecanide is the one that even the consultant says he cannot change me from "without significant side effects' but it certainly is known to cause gut sensititvity and even set up new pathways in heart HOWEVER whenever I have tried to reduce on it everything plays up so for me it is KILL and CURE at moment.     The more tricky aspect for me is that the symtoms that have worsened whilst back on the meds are the same as the symptoms magnified as I had without taking the meds so I really don't know if I am coming or going.    At moment I am getting weaker and weaker and less and less well and more and more fed up but  'it is what it is' and 'what can I do'.   I get the impression from this website that different drugs are taken by quite a few people so are they on one's that causes more signifciant side effects?    I think I need a 2nd opinion but biding my time at moment until the camera test.    It's a couple of weeks away.
      Report
    • Posted

      I also am taking Flecainide and after the dose was increased three months ago I have gained 10 pounds. Have you noticed any weight gain while taking Flecainide? I am on 150 mg 2xday. 

       

      Report
    • Posted

      As I went on 3 new drugs at the same time I do not know which one is the one that put the weight on  - I've always thought it was the bisoprolol but in hindsight I have taken that in the past and didn't put weight on so the other 2 news tablets are apixaban and flecanide.      There is no change in my story since 9 months ago other than I am getting weaker and weaker all the time and more or less housebound because of symptoms but coping quite well with it mentally!     I am due to see the cardioligist soon however the answer from him and the GP's is always "Do you want ablation or not"  - they see that as the only answer  - when in fact I got a lot worse since the last ablation and I had some of my symptoms before the heart went beserk originally.   I like the doctors have no answers and so manage as best I can.    For sure if I try to cut down on flecanide it will go again. 

      Report
    • Posted

      So sorry to hear that you are getting weaker. How many ablations did you have already and at what age were you? One thing that has influenced me to go ahead with it is: "I am not getting any younger" and as I age I think it will get harder to recover. I am not sure that my problems are not genetic, I remember having atrial fib as a child, I just did not know what it was and really did not even know it was not normal.

      Report
    • Posted

      I didn't have a problem at all until I was 57 and then ablation once at 59.  I  know some people have several ablations and from what is said here for sure experiences are all different.    A lot of people don't even know they are in AF but I know in an instant and ONLY treatment gets me out of it once in  - for a long time that meant A&E now I pop an extra pill and so far just got away with it but them I am knocked out for days.    My problem is not the ablation itself but the fact that I have other problems which will be worse because of the ablation  - and I also believe my other problems are the reason for the trigger of the ablation so because they are unresolved or rather untreatable  - the ablation might only be temporary again and make me worse in the meantime.   It's hard at moment - I'm not a wimp and have had a few operations but of course "how do I know" that it won't help!!   I don't seem to be able to discuss it with anyone  - it just given to me as a "do you want it yes or no"     If ablation is going to get you off the drugs them its worth it.

      Report
    • Posted

      I had ablation procedure done yesterday and an so glad I did. When I was dismissed this a.m. the doc cut my Flecainide from 150 mg 2xday to 100 mg 2xday. Of course there has not been enough time to see how it will affect me but I am certainly hopeful I will have more energy and lose some weight. The ablation was no picnic but not real bad either. I guess the worst things were: numbing my throat and inserting the "camera" (TEE test) then after the ablation I had some pretty severe pain in groin area where the heart catheters were inserted. I am just thankful it is OVER and I am back home. Now to rest and heal. 

      Report
  • Posted

    I am having a cardioconversion and then staying in hospital for administer of Tikosyn ( an alternative to Flecainide - which causes nasty side effects for me ) Tikosyn sounds pretty nasty too but seems to be only alternative . 

    Has anyone tried it ????

    Report
    • Posted

      I've never heard of Tikosyn  - is that a drug prescribed in UK or are you somewhere else deirdre?         Sounds sensible to trial drugs whilst in hospital  - it acutally says on the flecanide leaflet that is how it should be originally prescribed ...but they just prescribe it to you and bundle you off home from hospital.         I thought it was the beta blockers that gave me the extreme fatigue but I'm now realising it might well be the flecanide and  had a shock when I weighed the other day - have put on a stone in 3 months!  Eating just the same as always!   At moment I do feel like I am on a steady downward path although the actual episodes of AF are  calmer ...ie potentially it could go any time and feels like it might but isn't.   Anyone in UK on Tikosyn and how are you doing? 

      Report
    • Posted

      Sorry, I asked if this is your first ablation and I see you posted 20 days ago that you had one at age 59. 
      Report
  • Posted

    I am on flec but the Docs like to use a sledhammer. I was on 50 2x and had a break through so the doc said 100 2x. I felt 1/2 dead and had a head ache for a month on the 50 so I suggested 75mg. The doc said it was a lot of work to cut a pill in 1/2. I ignored him and am taking 75mg. He also had me on Bis 2.5mg which dropped my HR to LT 50. As it was just in case I stopped taking it.  6 mos no AF.

    I also addressed all the known triggers. I stopped drinking from 3 drinks a day, no caffine, no decongestants,or anything else.

    There is an Australian study that said alblations were way more suceddfulif you are in good physical shape with low BMI. 

    I WOULD LOVE TO GET OFF THE  FLEC

    Report
    • Posted

      I also cut a 50mg tablet in half and some manufacturers one's are better to cut than others.    The doctor wanted me to take 3 x 50 per day but it became clear it was more practical to take 2 x 75mg.   I've now seen the consultant and am now being referred for ablation.  In meantime I am so weak I just don't know what to do with myself but onwards and upwards so to speak. 

      Report
    • Posted

      I also was cutting Flec in half, taking 125 mg 2xday for a couple of years then doc increased it to 150 mg 2xday. I really had no problem cutting it using a pill cutter. Like you, I cut out caffiene recently. I had to stop 24 hours before surgery so I weaned myself off the week before to avoid a headache. Now I am drinking decaf coffee and tea. So far have not had a Coke Zero but I sure would like one. smile  Yes, I am sure it would have been better to be in good physical shape before an ablation but I am 71 yo, a little overweight and get no exercise because of a bad ankle. I am amazed at how well I did after the ablation which was done three days ago. I am not driving yet but hubby and I went to the grocery store today just to get a few things, no major shopping. Doc decreased flec from 300 mg day to 200 mg a day the day I had the ablation. Thinks I can stop it completely in 8 weeks. 

      Report
    • Posted

      I had NO energy after Flec was increased from 125 2xday to 150 2xday. Also, gained about 12 - 14 pounds in three months. I am HAPPY  I had the ablation three days ago. Have done extremely well. I can already tell I have more energy in just this three days with the reduced dose. Will this be the first ablation? If so, go for it and do not be worried. (I was scared to death and so grumpy for days before surgery but it was not bad at all) I was fully sedated even before the incision was made in my groin to insert the catheters into the femoral artery. I would not want to be awake during any of it. Stayed one night in hospital and was discharged the next morning. Only had one stitch which was removed before leaving hospital.  I will be happy to discuss it with you if you would like. 
      Report
    • Posted

      You have already picked up that I have already had ablation.   It is the experience of my previous one and the after effects that has so far put me off another for reasons that would be too long winded to put here however you mention being 'fully sedated' and I wonder what you mean by that  term  - were you aware of your operation?   I ask because I had conscious sedation and 5 lots of morphine in 4 hours of operation. I also went into AF during the operation which the consultant had told me several times in no unscertain terms was an operation for flutter and not AF.    Having said all that and I could add a LOT more the operation itself is not the only reason why I think the problem causing the AF will return again.   Anyway interested to understand your term fully sedated?

      Report
    • Posted

      No, I was  not aware of my operation. The day I scheduled the procedure I told the electrophysiologist that I wanted to be "asleep" and not know anything that was happening. He said that was fine. After I was prepped and had the TEE procedure (where they numb the throat then place a device (I called it a "camera"wink down throat to take pictures of heart thru esophagus (I was given light sedation for that procedure which wore off immediately) then I was taken to the lab where the ablation was to be done. The staff helped me off the gurney to the surgery table and began to "do their thing". They put an oxygen mask over my face and told me to count to 10. The next thing I remember is they were calling my name saying the procedure was over. The worst part of the entire ordeal was the TEE (having to gargle a minute and a half with a numbing solution) and dealing with pain at the incision site in my groin area. I had to keep my leg completely flat and still for six hours. After that the initial getting out of bed was VERY painful, took me 20 minutes to wiggle around enough to get my feet on the floor. The pain subsided drastically after the initial getting out of bed. I am currently 5 days post-op and am feeling great.

       

      Report
    • Posted

      Sounds much better than my experience.  I didn't have any pain in groin but a lot of pain in chest after.  I also had to keep flat not even rest my head for so many hours after although it didn't seem to stop them asking me to wiggle from the operating bed to the ward bed!!!   I think that is why I had  haematoma in the groin found when I got back to ward but they were looking out for it so action was very speedy and groin was pumped very efficiently to remove!    Are you UK based? 

      Report
    • Posted

      Sorry, I just now noticed your post. No, not in UK, I am in US. My ablation was done 10 days ago and I am having numerous "near syncope spells" as of just the past 3 days. How disappointing, I was thinking this procedure would solve my heart problems and now I am almost fainting. As far as moving from the op table to the ward bed, I think the staff in the op room must have all pulled my sheet with me on it because I sure was not awake. Also, I am disappointed that I have not lost a single ounce since the Flecainide has been reduced. 

      Report
    • Posted

      Very disappointing for you sorry to hear that.    I rest my case  - that because they don't know what triggers AF  then unless you find the cause for the trigger it will keep happening and is ablation the answer.  Something for me to discuss when I get to hospital.   In the meantime I keep taking the tablets and remain postive.

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up