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Flecinaide after 5 weeks

Pommerania78 profile image
18 Replies

Good morning. If you don't mind, I have some other questions. As I mentioned, I have been on Flecinaide for about 5 weeks. I have had several episodes of several hours duration in the last several days where my pulse goes up to, say, 150, and then back down to normal. And I have had several arrythmias that I caught on my "traditional" BP machine that maybe lasted a minute or so. My machine does not say what kind of arrythmia. I have left a message yesterday with my cardiologist, but no answer yet. Are these incidents "normal" with Flecinaide? Or should Flecinaide stop ALL arrythmias, etc? Also, should my heart be checked periodically while on Flecinaide? I am thinking of getting another cardiologist as mine is not very talkative! Also, he says that I do not need yet to be on anti-coagulants. Thanks again for your thoughts.

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Pommerania78 profile image
Pommerania78
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18 Replies
BobD profile image
BobDVolunteer

Treating AF is a thankless task as we are all different. Finding the best combination of medication can be a long job and there are no guarantees that any of them will work anyway. Remember that any and all treatment is only for quality of life and probably the most important thing is good rate control. Since Flecainide can produce other arrhythmias it is normal to also take a beta blocker to help with rate control but you do not mention that. Perhaps a conversation with your cardiologist is in order.

Pommerania78 profile image
Pommerania78 in reply toBobD

Thank you for your message. I take 50 mg of Toprol once a day.

mjames1 profile image
mjames1

If you're planning on seeing another doctor, probably best to show up informed with documentation of thse arrythmia's. I highly recommend the Kardia 6L for this purpose. And since you're on flecainide, I would also see an EP if possible not just a general cardiologist.

Here is a link to a current thread on ekg monitoring when on Flecainide.

.healthunlocked.com/afassoci...

Jim

Pommerania78 profile image
Pommerania78 in reply tomjames1

Thank you. Last night I ordered a Kardia 61. I will look into your recommended website.

secondtry profile image
secondtry

Flecainide should stop all AF (well it did in my case), if it doesn't then ask your cardiologist about an increased dose or what his/her next suggestion is.

I have an ECG every year to check for side effects of Flecainide or other developments.

I would get another cardiologist as peace of mind and better results come from working with a cardiologist that responds on your wave length. If funds allow, a private appointment.

Re anticoagulants, a full and frank discussion with your cardiologist before taking the decision only you should make. I would also check YouTube to listen to Professor Richard Schilling and York Cardiology on the subject.

bean_counter27 profile image
bean_counter27 in reply tosecondtry

The reality for most PAF sufferers is that Flecainide probably just reduces the frequency and duration of AF episodes - at least that's what it does for me. Mine is combined with a beta blocker for rate control (Flecainide for rhythm control) to stop HR from getting too high. My understanding is you'd normally get combination of medications that together target rate and rhythm control rather than one or the other.

secondtry profile image
secondtry in reply tobean_counter27

There is an exclusive club 😁 of a select few on this Forum who have been prescribed just Flecainide.

You are right the norm is a combination and I have repeatedly challenged my cardiologist on this; this year my question to him was 'does getting older increase the need for rate control', his answer no it decreases the need! So far 10yrs and counting he has been right as I have had no problems; just 2 short episodes in that time and no adverse HR issues.

I believe the Flecainide has been supported with Lifestyle changes including supplements to result in my AF free period, although who knows what comes next!

Pommerania78 profile image
Pommerania78 in reply tobean_counter27

Thank you for your suggestions. I take 50 mg of Toprol once a day and I am losing weight.

Pommerania78 profile image
Pommerania78 in reply tosecondtry

Thank you for your suggestions.

bean_counter27 profile image
bean_counter27

I started on 50mg Flecainide twice a day, which proved ineffective and was increased by cardiologist up to 100mg and then 150mg. Still have episodes but infrequent and generally shorter in duration (used to be 12-14 hours) but now ranges from <1 hour to 3+ hours.

My early experiences with AFIB started with hearing my erratic heartbeat when using wife's BPM. I was subsequently diagnosed with ectopic beats and probably had AFIB back then but wasn't happening when I was being monitored.

I now use devices like KardiaMobile 6L and other mobile devices including smartwatches to identify AFIB events. I also just purchased a Wellue ECG Recorder with AI Analysis, which I can wear to do a 24 hour ECG. The results are then analysed and I get a detailed report on the ECG's findings in PDF format I can send to cardiologist if noteworthy events occur. This will significantly increase the likelihood of capturing PAF events not normally seen in 10 min ECG taken during annual visit to cardiologist or even when wearing holter monitor for 24 hours, which I've had 2 or 3 times in 5 years.

Coincidentally, the first full day I had the Wellue unit on I had an AFIB episode lasting about 3 hours - the 1st one I think since October. Will be interested to see my cardiologist's thoughts on the device and its recording.

Thomas45 profile image
Thomas45

I was on Flecainide for 12 years without a beta blocker. I am asthmatic as well as having AF and beta blockers are not recommended for Asthmatics. Except for the first two years when I was still getting some arrhythmias while I was on a low dose of AF, for the latter 10 years I had almost no episodes. I was prescribed the maximum dose of 300mg a day.At some stage between years 11 and 12 of Flecainide I went into persistent though asymptomatic AF, which roughly seven years later I deem to be permanent AF.

Pommerania78 profile image
Pommerania78 in reply toThomas45

So, do you think the Flecainide just stopped working?

Thomas45 profile image
Thomas45 in reply toPommerania78

My GP at the time, who has specialist knowledge of AF, considered that AF had stopped working. The consultant told me to stop taking Flecainide. I was naturally worried at the possible result of that My GP realised my concern and told me that there would not be any adverse effect if I just stopped, so I did, and I still feel no different from when as I was taking Flecainide, except I do not get any episodes which I can feel. Although I have permanent AF it is totally asymptomatic.

Af8b_futter profile image
Af8b_futter

I take flecanide 100mgs 3 times daily and I too still have arrythmias. I am now also on apixaban because of stroke on July. But didn't score high enough on chad²vasc score previously because of my age. If you feel you would want to be on Apixaban you need to fight for it. I want to see patient choice involved here for apixaban not just a box ticking exercise. Please feel free to read my bio.

Tapanac profile image
Tapanac

I found flecainide to be a miracle drug. However I was put on bisoprolol as well. Also apixaban anticoagulant.

Flecainide is a rhythm control and bisoprolol a rate control. With af clots can form behind the heart so anticoagulants are important to help prevent strokes.

Normally at this stage you are transferred from a cardiologist to an EP

I was told that apixaban is kinder to the brain and the stomach

Good luck, stay well snd have a nice Christmas

paulypurplepants profile image
paulypurplepants

I haven’t posted for a while as my ablation in July 22 seemed to sort my AF, but I was still getting mostly short episodes of SVT that has a couple of times not reverted, so ended up in the resuss room at the hospital to trip me back. After the last one ( on no meds) I was prescribed Flecanide 50mg twice a day and 2.5mg of bisoprolol once a day. With a plan to get me in for an ablation on the upper chambers quite soon. After a week I dropped the bisoprolol to 1.25 mg as my resting pulse had dropped to mid 40’s. So now I’m feeling great…. Resting pulse low 50’s. Had no issues in 2.5 months at all. My op was cancelled the night before last week due to no anesthetist and awaiting a new date.

However, I’m doing a lot of fitness work and feeling fine. I also made the decision not to take apixaban after leaving hospital last time, as I’m not in AF or SVT. I’d obviously go back on it if that changes.

Finally, I bought an Apple smart watch which is quite incredible as to the heart info it covers. Definitely recommend getting one as it does ECG’s constantly. My Cardiologist suggested it.

Sozo profile image
Sozo

Although Flecainide has benefited some, it did Not do me well at all!!! It was terrible! Here in the U.S. there was a time when you would have to be hospitalized for a couple of days when prescribed it to see how you fared. (personally imo not long enough). Now they no longer require a hospital stay. Go figure... Anyway you may read more about the drug on drugs.com as well as mayoclinic.org. Also in imo I would seek out electrophysiologist. But still yet you have to do your own homework and discern what is best for you. In my experience doctors generally do not offer but just a wee bit of info. All the best to you...

Pommerania78 profile image
Pommerania78 in reply toSozo

"My" cardiology nurse told me that they no longer hospitalize patients at the beginning of Flecainide because the insurance won't pay for it. I am trying to get an appointment to get a second opinion and hopefully get to see an EP. Thanks.

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