Flecainide Worries

[Debjimmay]

I have Afib and my cardiologist wants to start me on Flecainide. I’m terrified to take it after reading all the side affects. I’m in 180mg if Diltiazam and 5mg of Lexapro. I read where both of these have serious side effects when taken with Flecainide. My cardiologist has scheduled a stress test to check for CAD before I go on the Flecainide. He has also informed me if I do not follow his orders that he will not be able to treat me and I will have to look for another doctor. I am so stressed out right now and don’t know what to do. Has anyone taken Flecainide and if so, is it helping and have you had any side effects?

[mjames1]

Yes. I have taken Flecainide with Diltiazem. It's a very common combination, so I would certainly not be concerned about taking them together.

As to Lexapro taken with Flecsinide, Drugs.com shows a serious interaction, so something I would discuss with both your doctor and pharmacist.

Your cardiologist seems to be following the proper US protocol with a stress test prior to make sure your heart is struturally sound enough for Flecainide.

What I don't like is "He has also informed me if I do not follow his orders that he will not be able to treat me and I will have to look for another doctor."

I always seek out doctors who believe in shared medical decision-making, and not "i'm the doctor, and do what I say."

With many insurance plans in the US, it's very easy to switch cardiologists , so that's always an option if things do not work out with this one.

Is your cardiologist also an electrophysiologist (ep)? Once you get to the Flecainide level, an EP is usually best to guide you. They are better at reading electrocardiogram, and they also are more knowledgeable about ablation options.

But back to Flecainide. If you qualify, and if monitored properly, it's certainly not a drug to be terrified of. It has helped many of us , including myself, get back our lives by keeping us in normal rhythm, with relatively few and often no side effects compared to some other afib drugs.

Jim

[Debjimmay in reply to mjames1]

Hi Jim. Thanks for your reply. I had a long reply typed out to you, but somehow I lost it but I basically wanted to say that yes the doctor I am seeing is an EP and my regular cardiologist referred me to him. When he told me, I would have to see another doctor if I didn’t follow his orders (mainly as far as the medication goes) I really felt frustrated and confused and even a little hurt.

He said he wasn’t trying to be mean. II think the reason he said this was because I am on 5 mg of Eliquis twice a day, and I wanted to go down to 2.5 because I was having so many nosebleeds and bruising. He told me there is no way a doctor would prescribe me 2.5 mg and that I have to be on 5 mg. at least until I’m 80 or consider the Watchman.

I hadn’t been bothered with Afib for almost 2 years so I begin to wonder if I even had it at all and I am taking all this medication and I probably don’t even need it. So i was finally able to talk my regular cardiologist into giving me a 2.5 mg prescription for Eliquis and that’s what I’ve been taking. But now that my Afib is acting up more than it ever has, I decided to take the 5 mg Eliquis because I had pills left over from before. I think that’s why the EP went over the edge and said I couldn’t do that because it was dangerous.

I just wanted to be totally honest so you would understand why the EP was being a little on the rough side with me. I’m still not sure what to do but it seems like a lot of the people on here feel that the Flecainide is safe and helped them.

[Singwell in reply to Debjimmay]

Yikes, I see why your cardiologist went ape! The Eliquis is an anticoagulant - it does a completely different job to the other meds you're on. I understand how anxious you might be feeling but it'll really help you to understand what each drug does. Ask your cardiologist to explain it all clearly so you can make an informed decision. I hope the responses today are helping you.

[Paulbounce]

Hi Deb

You wrote

He has also informed me if I do not follow his orders that he will not be able to treat me and I will have to look for another doctor

Hmm charming. I would find a more understanding medic asap.

Flec can be very effective but be sure to follow your doctors advice on the correct dose to take.

Best Paul

[Singwell in reply to Paulbounce]

I think he might have been really worried. Deb is in the US by the looks of it. He wouldn't want a legal case on his hands. I agree he didn't handle this well though.

[Blearyeyed]

As mjames1 says it's a pretty common combination because of how well people can improve on it.I don't know how long you've been on other medications , but obviously if you've suffered side effects with other things I can empathize with you and understand how it can make you feel a bit anxious about trying something new that could also have side effects attached.

What I will say is what you already know really.

You won't know how you respond to any new medication until you try it.

Every medication , and natural alternatives or supplements, can have side effects which can be different for each individual , so you need to assess the benefits and if they outweigh the risks.

In the case of cardiac treatment medications , the benefits are definitely there , and if the drugs work for you , as they do for the majority of people taking them, the difference that it can make to your quality of life is well worth having taking a chance on trying and , if you do get some, having some manageable or milder side effects if they do unfortunately occur.

It can also take a number of weeks before you feel improvement daily and you can have the odd side effect in the first few weeks as you body gets used to the change.

The best thing you can do is try to give it a chance.

Try to distract yourself from concentrating on the potential side effects or negatives and remind yourself of the positive reasons you want to try it.

Remind yourself that just because the medication can cause side effects it doesn't mean that you will suffer them , even if you've had problems with other drugs.

Try and remain calm with relaxation and breathing while thinking of the positives when you begin to worry about your treatments generally because the more stressed you feel the more symptoms you feel and you can actually start to have symptoms caused by feeling anxious that are similar to the side effects themselves, and that can become a bit confusing.

In this way , Added Stress can make starting a new medication harder.

I hope you also get some more help and advice about the medication that has caused you nosebleeds, perhaps get a second opinion about the dosing of that , or if there is another medication that you could take as an alternative.

I hope you give it a chance and that it helps you , please let us know how you get on , take care , Bee

[Debjimmay in reply to Blearyeyed]

Hi Bee. Thank you so much for your response. As far as my stress and anxiety go, you are spot on! I worry about everything and you are right in saying that this can make the side effects worse. I have a bad habit of researching everything on the internet which does more damage than good sometimes. I have a hard time stopping though,

Thanks again. I appreciate your thoughts and advice. 😊

[Blearyeyed in reply to Debjimmay]

Well there's nothing wrong in doing a bit of research , it's sensible and proactive to know more about your illness and treatment options.It's just important to remember to keep the positive side of medications at the forefront of your mind , rather than focusing on , and sometimes overthinking the potential negatives.

Wishing you well , Bee

[OzJames]

hi Deb interesting comment you made to someone that you hadn’t been bothered by AF much for 2 years. So question here is, is it ectopics that are bothering you?

When I did my annual bloods I asked for Vitd3 magnesium and CoQ10. I was low in all of them especially CoQ10. I’ve now been supplementing daily.. 330mg magnesium, 2000iu VitD3 and 200mg CoQ10. I also improved my lifestyle, diet etc I’m now 12 months into this regime and barely notice any errant heart beats aside from 1 episode of AF in the last 13 months. Before you start any supplements make sure you get the clearance from your cardiologist.

[Debjimmay in reply to OzJames]

Yes! The ectopics are what is bothering me the most. Thank you for asking that question. I have a Kardia Care monitor and that’s what most of the readings are. I have this constantly, off and on, all day. I also have pulsating tinnitus, so not only do I feel every missed beat, I hear every missed beat in my ear. My ectopics are every other beat or every third beat. This causes extreme anxiety and I feel weak and have low energy and I am afraid to exercise because a few times exercise has set off my AFIB.

I have tried CoQ10 before, and also magnesium to no avail. The weird thing is my symptoms seem to come and go. I may have nothing for several months and then I’ll have problems for several months. I’m worried as I get older I may have the symptoms constantly I don’t know how I’ll be able to handle that. People that have this condition truly understand what you’re going through. I don’t seem to get much sympathy from family and friends and not even my EP or regular cardiologist seem to understand what this is like. Many times I feel that because I’m a woman I get brushed off a little bit more as I don’t think doctors believe women have heart problems as much as men do.

[Auriculaire in reply to Debjimmay]

Have you ever been treated in the past with a Fluoroquinolone antibiotic such as Cipro for UTI? Those who have been "floxed" ie had a bad reaction to an FQ often have this cycling of symptoms .

[OzJames in reply to Debjimmay]

Ok I sent get that pulsing in my ears too, it’s so much better now. Have you check your blood levels. Maybe try the Vitd3 if it’s low around 2000iu a day but make sure you get the doctors clearance first

[Debjimmay in reply to OzJames]

Hi James. I thought about trying vitamin D3, but when I added it to the medications I am taking on the Drugs.com app it said this:

Vitamin D3 (cholecalciferol) interacts with Atrial Fibrillation.

Vitamin D analogs function to increase serum calcium concentrations and can exacerbate arrhythmias, particularly in patients receiving cardiac glycosides. Therapy with vitamin D analogs should be administered cautiously in patients with or predisposed to cardiac arrhythmias. Clinical monitoring of serum electrolyte concentrations and cardiac function is recommended.

[OzJames in reply to Debjimmay]

I’ve not heard of that before…. My D levels were in the 50’s and after 12 months of supps got to 90. I’ve now doubled to 2000iu a day to see if I can get just over 100 levels. I read last year about a guy called Steven Carr who someone posted about here. He has a blog and quite interesting to read just google and you may find it or search here and you might pick up his name. It’s quite anecdotal when you read these things and cannot be taken as scientific. Having said that it works for me and has quietened down my hips and hops! Maybe get your bloods done. It could be the combo of what I’m taking that helps? I always leave 2 hours after I take my metoprolol before I take these supps. I’ve also reduced my dose of metoprolol to about 9.5mg twice a day and I’m feeling much better. Also the reason I have the 2 hour clearance is I’ve read it reduces the risk of lessening the effects of either the drugs or supps..

[secondtry]

I think its all been said: you must have confidence in your medic or find another, continue to do your own research, worry less (with this I found more emphasis on the spiritual helped, for me prayer & deeper interaction with Nature) and remember you are the most important part of your medical team.

I can't speak for the interaction of different drugs but have had a positive experience with Flecainide; despite all the listed side effects it is a relative old tried and tested drug and I understand works best for those with Lone PAF. I have taken a medium dose (200mgs) for 11 years and no problems and no AF. I quite understand your disquiet, when I started on the drug I was determined it would only be for 6 months 🤣.

[Tilly1957]

I hate taking any medications but I am more terrified of having a stroke, after experiencing a TIA prior to afib diagnosis. I am reluctantly compliant with anticoagulants (Rivaroxaban) and resigned to the fact I will most likely be taking them till the end of my life. I take nebivolol at tea time. I had verapamil as a pip, seemed to help a bit, but was red flagged due to potential interactions with the nebivolol. After waiting over a year for a cardiology appointment to review my meds (it has only just come through for a couple of weeks time) I got my credit card out, and booked a private consultation with a cardiologist last year (possibly September/october) . We discussed everything afib related. Outcome : stop verapamil pip ……..and suggested I start flecainide 50mg am & pm, with the potential of 150mg + 50mg metoprolol as a pip.

My brain was panic stricken, with all I had read about the toxicity and side effects of this medication! I went away, a few weeks later the echocardiogram showed my heart was fine and ok to take it. He also referred me for ablation, via the nhs. However, I was still freaking out about taking flecainide. Eventually, because I was still getting weekly afib, took my fears and kicked them out the door. Well, what a surprise. A few initial side effects, but it soon settled down, and I actually felt a bit better. It has reduced the frequency of my episodes a bit , but when I do get one, I take the pip, and it is all back to nsr within 2 hours, instead of 8-10. However, I find my bp goes quite low afterwards for a while, so I will discuss this at my consultation in 3 weeks time. Overall I am glad to be taking it for the benefits and with hindsight, I wish I had started flecainide as soon as I got it. I can’t comment regarding the combination of it with the other meds you mentioned, sorry.

[Debjimmay in reply to Tilly1957]

Thank you for that! It seems most people on here are saying that Flecainide was actually a great choice and they are happy with taking it and with the results. It looks like if nothing else I should give it a try. Everyone on here has been so helpful. Thank you again..

[Tilly1957 in reply to Debjimmay]

my cardiologist also said to me if it didn’t suit me or didn’t work, then I could stop it .

[BeeBee79]

I would request that along with a stress test, your Long Qt interval is monitored for the first month too

[Debjimmay in reply to BeeBee79]

I’m not sure what the Long QT Interval is but I am looking it up now. Thank you

[Singwell]

Yes, I uses it successfully for 3 years. Actually it partners well with Diltiazem so I don't know what you've read about that. Maybe too much Dr Google. Flecainide is an effective anti arrhythmic and Diltiazem is a rate controller. I don't know about the other medication you mentioned. My EP suggested the 2 of these together to help control my AF. I did sometimes get outbreaks but it was allowed to take extra Flecainide if needed. The Diltiazem stops the Flecainide from making your heart race too fast (which it can do on its own, but not in all cases). If your cardiologist is happy with your heart morphology and you're a reasonably active person then this regime might suit you.

Why don't you ask him what his reasoning is? That might set your mind at rest.

[SuziElley]

I take Flecainide with Diltiazem with no side effects. I did have to have the dose of my Diltiazem reduced as it caused water retention but both working well together now.

[Tapanac]

I found flecainide a miracle drug. 50md twice a day since 2017

[Peacockmumma]

I’ve been on flecanide for 3 yrs ..no problem. Still get episodes but don’t feel my heart pounding now..just a gentle wobble and not had any side effects. If you read side effects on any tablet you wouldn’t take any lol

[Debjimmay in reply to Peacockmumma]

You are so right! The first thing I do when I get prescribed a drug is look up the side effects. Almost everyone makes me question if I should take the drug or not.

[TracyAdmin Partner]

I am really sorry to read your post, and hope you are ok. It is natural to feel anxious about taking new or changing a medication, so if you would like to contact our Patient Services Team, we are more than happy to offer our support; heartrhythmalliance.org/afa...

You may find it helpful to download our AF Drug Information booklet from the AF Association resources tab: api.heartrhythmalliance.org...

Kind regards

TracyAdmin

[Debjimmay in reply to TracyAdmin]

Thank you!

[Nightmare2]

Looks like you live in the States, very different from living in the UK regarding GP's and what they do and say, in the UK they would not be saying unless we followed their advice we could find another Dr. the choice is ours here.