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Questioning my need for flecainide or amiodarone

blmbmj profile image
27 Replies

Hi. I know I have a history of AFib--I get an attack MAYBE 3-4 times/year and it lasts for 15 minutes or so.

I had not seen any provider for it because of stupidity. BUT, when I was in hospital for an infection last November 2022, I just happened to have an AFIB episode while I was hooked up to the monitors, so that started the epic saga into treating my AFIB.

I went home from the hospital on Amiodarone, Metoprolol Tartrate, Isosorbide, Xarelto and Lipitor (even though my cholesterol was never high.)

I have not had a single episode since (because it only happened a few times/year anyway). But, after a battery of tests, my cardiac stress was just slightly irregular.

Ultrasounds and multiple scans found nothing. So, I did a cardiac catherization, which came back all clear, with maybe mild heart damage (that I suspect happened when I had Scarlet Fever as a two-year-old child some 64 years ago, but was aggravated by my having COVID three times.)

Two weeks ago, one of my cardiologist took me off Amiodarone and Isosorbide and replaced them with

Hydrochlorthiazide and, sadly, FLECAINIDE 100mg/twice a day.

I don't think I need these medications on a full-time basis, so my question is:

IS anyone on the "Pill In A Pocket" protocol for Flecainide, and is it successful?

My AFIB bouts are so rare and so limited in time that I question the need for all of these cardiac meds.

My Electro-Cardiologist says I really don't qualify for an ablation or a Watchman device.

Thank you for reading this.

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27 Replies
mjames1 profile image
mjames1

Yikes. Only three to four afib episodes a year, lasting 15 minutes each, and they sent you home on amiordarone, metoprolol, etc.! My non professional opinion is that is the definition of over-treatment!!!

And 100mg daily Flecainide is not much better, given your very low afib burden of infrequent and short episodes. And why the metoprolol? It's a very weak anti-arrhythmic and again with your low afib burden, why add unnecessary drugs and side effects.

PIP Flecainide has helped many, but given how short your episodes are, by the time the Flecainde got into your system, you would have converted already. That said, if you qualify, no harm in having it around should you not convert in 30 minutes or so.

Xarelto is good if your risk score analysis warrants it. Can't comment on the other drugs you mentioned.

Jim

blmbmj profile image
blmbmj in reply to mjames1

Thank you for your reply, MJames1.

I have an appointment in four days with the Electro-Cardiologist and will raise these issues with him then.

I might add that since I started the Flecainide two days ago, my heartbeat feels weird at night for about an hour. So, my heart may not even appreciate that flecainide. :-)

The Isosorbide is used to prevent angina, but I don't think I ever had angina.

WHAT I DO HAVE is excellent health insurance that pays at high levels, so, I believe there may be a connection there, sadly.

mjames1 profile image
mjames1 in reply to blmbmj

I see you are in US. Even though I don't think you need an ep, given the drugs they have loaded you on, find one at a larger teaching hospital. And ask them what is the purpose of a daily anti-arrythmic for someone who only has 3-4 short episodes a year. Personally, I think it's unconscionable. Also, have them re-evaluate your CHADS2 risk score, to see if you need to be on Xarelto or not. And ask to get off Metoprolol.

When I was in a similar position, my cardiologist took a "watch n wait" approach. No daily drugs at all. Only until my afib burden increased, did my treatment increase.

Good luck and tell us how it all works out.

Jim

dmac4646 profile image
dmac4646 in reply to mjames1

You are very fortunate that Amiodarone caused no issues !

secondtry profile image
secondtry

I'm with Jim all those medications need firmly questioning.

My cardiologists did not favour Flecainide PIP 'too much of a roller coaster for the heart'.

Personally, with so few and short AF episodes, man first trial would be to go all out on the various Lifestyle changes you will see have been mentioned in the past on this Forum. I would also take a Mg compound & Co Q10 and do everything in moderation (ie less than you would normally do or have capacity for) for 12 months. Keep a diary.

OldJane profile image
OldJane

gosh- lots of meds yet not considered for ablation? I had flecanide as PIP when relatively rare episodes, still have but no episodes after the blanking period following my ablation

CDreamer profile image
CDreamer

I’m with MrJames & Secondtry, going from what you say this is gross over management.

In the UK we have the right to refuse treatment but I just read on another thread that doesn’t apply in the US? I wonder what are the consequences of refusing treatment, it’s certainly something I’ve done when I was sure a particular drug was not appropriate for me.

blmbmj profile image
blmbmj in reply to CDreamer

Thank you for sharing your thoughts. That is what I am thinking too. There are no consequences on not following the prescribed medications except that the prescribing physician will not want to continue you as a patient.

CDreamer profile image
CDreamer in reply to blmbmj

Oh, I don’t think an NHS doctor can refuse to have you as a patient for refusing to accept a treatment, so that would be different. I have made doctors cross for not accepting Bisoprolol but I was well supported by other staff for questioning. Our systems are very different and both have pros and cons - US system could be questioned for over treating - if you have Health Insurance - whilst there maybe a case to be made for many people in the UK not being treated soon enough!

jeanjeannie50 profile image
jeanjeannie50

How long did your AF attack go on for in hospital?

Amiodarone is usually a last resort drug, for you to have been given this when you have so few attacks sounds crazy. It's known as the last resort domestos of heart drugs.

Flecainide is quite an efficient drug, but again it's a bit OTT for you to have been given that high dose. I would certainly ask for a 'pill in the pocket'.

Having so few attacks, then in your shoes and if you are over 60 I would certainly want to continue with your anticoagulant.

If I had AF attacks a few times a year and only for so little a time as yours are (are you absolutely sure they only last for such a short time) I wouldn't want such medication. How are you measuring the attacks?

Having said that none of us on here are trained in cardiology and don't know your full AF history, your ECG may have shown something that necessitated the drugs you were given.

Let us know how you get on please.

Jean

blmbmj profile image
blmbmj in reply to jeanjeannie50

In the hospital, back in November, it was 20-25 minutes, but they started the IV Amiodarone immediately. :-(

irene75359 profile image
irene75359

I was prescribed flecainide, 100mg a day, some years ago by the hospital treating me at the time. As like you, I only had three or four episodes a year and asked my GP about using it as a PiP and he was in full agreement. It has been very successful, last year I only had one episode and it terminated in about 1-2 hours with flecainide. But it begs the question, if your episodes are self-terminating in such a short period of time, do you need a PiP at all? (at the moment) I am not at all surprised that you are questioning all these drugs, I would be too.

JayDJ profile image
JayDJ

Reading what you have said and providing that you have no other underlying health issues then I would say that all you need is an anticoagulant as a precaution. You are managing to stay away from Afib as such and the medication that you've been given is not going to cure it, it will only help to control it which you are doing very nicely on your own.

The one thing that you don't want to be doing at this early stage is for your body to be getting used to drugs that may lose their efficacy over time, as such that will buy you time for other treatment to come along. When there is money involved, question question & question it, as we live in a pretty bad world at times.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Well, you full up with drugs. ? is are they necessary?

We need your BP and H/Rate.

Seems to me to control ... something.

Flec is for rythmn. Yes, PIP for flec action is used.

Now some specialists say antico-agulants can also be PIP.

Ask ?s as to what drugs are for what.

Metropolol or Beta-Bloc is used for high blood pressure. Even so it is NOT the best for AFs or asmatics. It gave me pauses in the night and day breathlessness and fatigue. Bisoprolol is better. Both BB Beta Blockers.

cheri JOY. 74. (NZ)

petmice profile image
petmice in reply to JOY2THEWORLD49

Thank you for your comment on Metoprolol and asthma. My EP just said, "Well, that a rare problem...." I see him tomorrow for a 3-month ablation followup and will press him to stop the Metoprolol because of what it does to my asthma. I thought it was just my imagination. I feel better knowing I'm not the only one!

CDreamer profile image
CDreamer in reply to petmice

Definitely not the only one and Beta Blockers are known to exacerbate asthma in some patients.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to petmice

Hi

Yes ,Metroprolol made me breathless and I am NOT an asmatic.

But I was given another one for hypertension back in 2008. They had to stop that one.

I learnt that first line every stroke patient has metropolol. But since my complaint when I said NO to it offer Bisoprolol for AFers.

Be proactive and understand your meds and diagnosis.

cheers JOY

blmbmj profile image
blmbmj

Hi Cheri.

My heart rate has been between 61 and 78 for years. Only higher under exertion, when it can go to 90-100. (I have an Ourra ring, so that is how I know)

Blood pressure is 130/92 on most days for the past year. (I usually check it twice/week at home.)

I have checked my heart with a Kardia device for a couple of years, which is how I know how often I go into AFib, which is Maybe 2-3 times/year for only a few minutes.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to blmbmj

Hi

Our levels are different in nZ.

Cholesterol .. Best 4.0

Triglyerides - Best below 2.0.

cheri JOY

BP but on your meds 90s Diastolic is too high.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi again

As a guide.. any heart spec would like AFs to be on a cholesterol reading of 4.

But the good cholesterol can be taken off the bad cholesterol reading.

Remember that statins and CCbs dont mix.

cheri JOY. 74. (NZ)

blmbmj profile image
blmbmj in reply to JOY2THEWORLD49

I just had a Lipid Panel done last month, and the results have stayed the same for years:

Cholesterol: 145; Triglycerides: 58; HDL: 66; LDL 67; VLDL: 14.

Ctchrise profile image
Ctchrise

hi-I am a 71 yr old female whose had Afib since for over 20 years. I had paroxysmal Afib that eventually was persistent. I had 3 ablations. The 2nd one held for 7 years. The last one held for 6 months. I was on Flecainide and ended up with hearing loss in my 50’s. I have been on Eliquis since my Afib has been persistent-so 3 years. After the last ablation failed, they started me on Tikosyn generic. My point is Flecainide has side effects that can be major. Best of luck.

blmbmj profile image
blmbmj

I am so sorry about your hearing. This makes me question even more why I am so many extreme medications. Thank you for sharing your experience.

Anonymouskd profile image
Anonymouskd

I agree all the medication sounds like overkill for episodes that last 15 minutes 2 or 3 times a year. Maybe discuss a blood thinner with your cardio. Clots can form quickly

Teresa156 profile image
Teresa156

I have fleconaide as a pip and have only had to take it once, in Nov 21. I had one episode of Afib last year, but reverted with a valsalva manoeuvre and I haven’t had any episodes this year yet. I’ve had Afib for 18 years. My episode resolved in 2 hours with a PIP when they usually lasted up to 10-12 hrs.

It sounds very over the top, the amount of meds you were given, ( especially the amioderone) and the amount of fleconaide you’ve been asked to take daily, for the very short time you are in Afib and the frequency of your attacks. You may not even need a PIP if they are so short.

blmbmj profile image
blmbmj in reply to Teresa156

I love your healing path!

SeanJax profile image
SeanJax

make sure you did not have more episodes of Afib than you thought. Please ask for a month of holter monitoring to make sure you don’t have asymptomatic episodes since your episodes were so short. If you have only 3 or 4 episodes each year than i the treatment is overkill. When it comes to anticoagulants please see an ep. And make a shared decision with him. Had you gotten a stroke it would be your brain which got affected and not the brain of any members in this forum. Or the brain of the ep. It is so personal decision to each one of us. Think over it . Best wishes.

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