flecainide side effects

[underinformed35]

Hello everyone! I just recently started taking Flecainide (about a month ago)for rhythm issues and pvc's and it has really helped. I have not had any pvc's since starting on it at all and I was having thousands a day every day!  My question is kind of weird. A few days ago I started having leg pain in my left leg. Then it started going numb. It would alternate between pain and numbness. I did not have any swelling though and now it feels better. Could that be a side effect of the medicine that is not listed or should I concerned?

[Brooke_38]

Hello...

I have been on Flec 2 different times for treatment of Afib...I don't believe that it causes any kind of joint or muscle pain. If it feels better now and doesn't return than I would chalk it up to coincedence. You could always call the pharmacy and ask the pharmacist if there is any corelation to this med and what you have experienced. I'm glad that the meds are helping you:)

[underinformed35]

thank you, that was really what I was thinking as well just wanted another opinion. I have read some really scary things about flecainide but so far it has been so great!! I am just keeping my fingers crossed that it continues to work! Have a great weekend.

[banglamom]

Sounds like it is working VERY well for you!  Did you start taking it with a few days stint in the hospital?  I have been on it since January.  On the second day, my heart was going so slow, I had NO pulse.  It was just it working WITH the other 5 cardiac meds I was on.  I got a pacemaker shortly after that.  My pacemaker has been the highlight of 2008.  

I find that sometimes my mouth, lips, tongue feel some numbness which I always thought was a flecainide side effect.  Consider that it is a "caine".. like novacaine, lidocaine, bupivicaine..  All the numbing stuff at dentists and when sutures go in.  I often have a burning gut if I don't take it with something to eat.  Have you experienced that?

I still have PVCs, SVT, skips and pauses (which I call engine knock) everyday... just not as bad.  I am considereing changing to something else but for me dealing with the flecainide is at least a known problem instead of the whole dark scary road of all new meds again and all that entails.  It usually takes at least a couople weeks to adjust to every change they make.  I almost always end up with almost no blood pressure.  Flecaininde at least doesn't add so much to the whole hypotension problem.  Glad to hear you are doing well with it.

As a nurse, I had always considered that one on the list of meds that declare there IS a problem.  I have not really grown to comfortable with it.  It has helped me here to see that people do OK on these things and even find that it improves things... like my pacer.  By the way... I got it as a back up and now I am over 75% paced  ALL the time.  I told my cardiologist that I recommend them to everyone.  :)

Blessings!

[Bon-Bon]

I'm glad to hear some positive reports regarding Flecainide.  One of my doctors prescribed it for my PVCs saying its the best medicine of all the choices for PVCs. (I'm sure he meant in "my case".)  

However, the other doctor said "NO. Do NOT take THAT!"  So I am hesitant and really don't know if I should, or not.  I had decided not to try it at this time, based on all the negatives I've heard.  Now, I am actually hearing some positives.  

So, I will be checking these posts frequently concernig what others experiences are, or, have been, regarding Flecainide.  I may or may not reconsider taking it.

[Bon-Bon]

I want to say "Thank You underinformed35" for posting this.  :  )

I am also thankful to all of those who have and will be posting; as, I am looking forward to reading all of them.

[banglamom]

If a doc wanted to start an ACE or a beta-blocker.. it is not a really big deal.  Very common, lots of data available, fairly few side effects...  There are other meds which you don't go into so lightly.  Flecainide, sotolal, tikosyn, amiodarone...  When I see some of these on my pt list of meds, it screams there is a problem- that simpler solutions couldn't fix.  If you haven't tried the simpler ones yet, it is definitely a better place to start.  When I say I had NO pulse, that means waking up from unconsciousness in the ER with the crash cart in play.  Very scary.

[kevk]

I have been taking Flecainide for thirteen years 150 mg twice a day. I have not had any sustained ventricular tachycardia since,  Never had any side effects. I have tried a lot of anti -arythmic drugs this was the only one that has ever worked.
Flecainide can be dangerous for some people, I had to have ECG`s done every other day to measure QRS intervals.

[Momto3]

According to my trusted EP, flecainide is not prescribed as a first line of treatment, and in fact is reserved for specific situations.  I was never offered anything stronger than a beta blocker until I developed cardiomyopathy.  Then, because my heart function was affected by the PVCs, the benefits of flecainide definitely outweighed the risks.

This is definitely a medication that requires your physician to decide clearly if the benefits outweigh the risks.  If they do, it is worth taking it.  I've been to a number of cardios, including several EPs, over the last 30 years, and NOT ONE was willing to prescribe beyond a beta blocker for benign PVCs.

I took flecainide for about 4 months and had side effects that involved my central nervous system.  Switched to rhythmol, and ultimately decided to see if an ablation could be curative.  

[underinformed35]

to banglamom-sorry just reading everyones post. I did not start this in the hospital but doctor said that I needed to stay home and take it easy with someone with me for the first three days. I was very scared of this medicine at first especially when reading that you needed to start it in the hospital and told him that. He had recommended the medicine one month and said go home and research this and when you come back in a month we will talk about it. So when I went back after reading I had pretty much decided against it. He did say that it is not the first line of treatment and does carry risks but he really felt like in my situation it would improve my quality of life. I was really having a hard time functioning. I do have some stomach side effects with it like you, but nothing to extreme. Just being able to get through the day is a blessing!!
To bon-bon I would be very hesitant to take this if I just had pvc's. Like everyone else has said, I would try other things first and then just find a doctor you can trust and take their advice. The EP specialist that I am seeing now is wonderful, but this is my second one. The first one basically said I can't help you, but this one just keeps trying things and really wants me to feel better. He has really given me some hope. Good luck. This forum is also a wonderful place for support and help with not feeling SO alone! Thanks everyone.

[Bon-Bon]

How are you doing today?  

Regarding the symptoms you mentioned (alternating pain and numbness in your left leg)?  Has it gone away, or, are you still having trouble with that?

I am sure you have probably spoken with your doctor regarding these symptoms?

Also, thank you for your suggestion in your previous post.  

Keep us in touch about how you are doing and if you find information regarding a connection with your leg symptoms and Flecainide.

Have you continued to be PVC free?  Based on your post, Flecainide seems to be quite helpful for you.

I pray you will be healed completely in Jesus name.  

Have a blessed day.

[Jerry_NJ]

I jump in to learn, not help.

I suffer only from AFib, and my EP doesn't want to risk an ablation (I am still unclear as the appropriateness of ablation for AFib anyway, seems there is) but after my last Electrocardioversion lasting only two weeks in sinus, and I was on a heavy dose of Rythmol SR (425mg twice a day), he as suggested three stronger medications, one being Flecainide which he said would require hospitalization for the implementation, a couple of days he said.  I have a decision meeting with him on Monday and I had about decided to live with AFib, but this post makes me think it may be enough "stronger" that it may be able to convert me to sinus, and hold me there.  I also read some have years of experience with this drug, it isn't the new med on the "block".  My EP put Amiodaione on the bottom of his recommended list, saying it was the most risky.

I am operating under the advice that if I'm a good boy and keep my INR between 2-3 my AFib does not put me at any more risk of heart failure than does my condition being forced in sinus.  So, if I am reasonably comfortable with AFib, just take my coumadin, and maybe a little beta blocker for rate control.

[underinformed35]

bon-bon, my leg is better but I am still not sure if there is a correlation. I am almost completely pvc free. I still have days that I feel really super tired, but I can live with that. Being diagnosed with sick sinus syndrome (I'm 36) was really depressing for me but I am just living one day at a time. This medicine has been so wonderful for me so far, but I have only been taking it for a month and a half. Good luck and keep us posted on what you decide.
jerry- this medicine is vey strong, much stronger than beta blockers which did not help me at all. You have to weigh the risks and benefits to you and only you know that for sure. I wish you luck and hope for the best for you.

[Brooke_38]

Underinformed35- GLad to hear that your leg issues have resolved. More happy to hear that you're PVC free:)))

Jerry- Everytime I have been started back on Flecainide it is out of the hospital with an event monitor. Just have to send in a reading 2 hours after each dose. The only time my cardio mentioned in-patient was to start me on Tykosin (I opted out of that one) As for the Amioderone, this has been put on the table twice now. My Dr refered to it as his "big guns" I basically told him to keep his guns in his holter...as I am not interested in this even as a short term treatemnt. If you are managing your Afib reasonably well, you should stick with your routine:)

[Jerry_NJ]

Thanks, I've had long periods of sinus rhythm (a year plus) from past electrocardios, but it no longer works, following my mitral valve surgery.  The only down side I have from AFib is I get tired easily, shortness of breath.  Even with a dangerous leaky mitral valve condition a couple of years ago I was able to jogg, at 10 minute miles, of faster.  Now I can't walk 15 minute miles, or walk up a grade without getting winded.  I have some advice that it is must I'm "out of shape", some AFib'ers seem to seem to be able to do heavy physical exercise without getting into an exhausted state.  I'll talk some more with my EP about Flecainide - it could be worth a try, one more try, to convert from medications.   Or maybe I can talk him into an ablation, ha

[banglamom]

I would definitely pick the ablation if that is a feasible option.  I have come to the point of being so fed up with the meds ( aback pack full of them that I am never without), that I am ready to inquire about a maze and see if they could just make me completely pacer dependant and no longer needing all the medications.  For a long time, they were "afraid" if the tried._______... I was going to need a pacer.  Well, since I got the pacer in March, I am almost completely paced.  Not too much to "fear" anymore.  I miss not being on so much medications.  They all have side effects- most of them take down  a blood pressure (usually purposefully).  I am so often whooped from being too hypotensive.  I have reached the "I can't take much more" part of the process to be sure.  Thanks for all the discussion and encouragement folks.

[EDDIE878]

I HAVE BEEN ON THIS MEDICINE OVER 10 YRS FOR A FIB..   WITH NO PROBLEMS   THE DOCTOR SAID UNLESS YOUR HEART IS BASICLY HEALTHY  THERE SHOULD BE NO PROBLEMS.....I HAVE NOT HAD ONE EPISODE IN 10 YRS.   GOOD LUCK  

[EDDIE878]

THE DOSAGE IS 100MG   TWICE A DAY   (MODERATE AMOUNT)  

[underinformed35]

I went in for my check-up and the doctor said my EKG looked much better and that if I felt ok I could hold off on the pacemaker which is great for me! I am still having some side effects from the medicine but nothing that makes me want to stop taking it because it is working so well. I have started swelling though all over and asked the doctor about it. He did not think it was a side effect of the medicine and said we would check my heart function the next time he sees me. Just wondering if anyone else notices this on this medicine or if it could be something else going on. Also I have crazy fatigue some days, is that common? The doctor said that if it was the Flecainide I would feel fatigue all the time. Also I have a really hard time taking my second pill in the evenings. With four kids and my crazy life it is really hard to remember to take a pill at 6:30 every night. When I forget to take it in about an hour or so I start feeling awful then remember but then I feel bad the rest of the night usually. What does everyone else do to remember? The doctor said that raising my dosage might help the medicine stay in my system a little longer so I wouldn't feel bad but I really don't want to raise the dosage unless I have to. Any ideas?

[babiole]

I have been taking flecainide along with digoxin for six weeks or so.  I alaready had a slight essential tremor.  Now, on the flecainide, my tremor is so increased, I cannot tolerate it.  I have been weaning myself off of the flecainide- first my regular 25 mg twice a day, then once a day, then for the past week, 1/2 pill a day.  I will be going back to my cardiologist soon, but should I continue the digoxin without the flecainide and will the tremors eventually return to their previous levels?

[allaflutter1213]

I take Flecainide for afib with no side effects, it has been a godsend for me.
I started the Flec at 50mg twice daily at home and went back to my EP after 3 days for an EKG, which was fine. I go back in 3 months for another EKG. That seems to be my only complaint for taking the Flec is the monitoring every 3 to 6 months while on the Flec.
I also had many (1000's per day) of ectopic beats, now I rarely get any at all unless I stress about something and release a substantial amount of adrenaline into my system.

[dstartakoff]

I just started on flecainide after a cardioversion (my first) and my heart seems fine
but I find periods at night where it is hard to draw much of a breath. Getting up helps
and a mild antihistamine helps. Is this serious?

[Kenny1948]

I started taking Flecainide 50mg twice daily in July, along with Metoropol 25mg daily for Afib and BP.  I had a minor problem within the first two weeks ( a very slow heartbeat ).  My dose of Meteropol was reduced in half and I had no further problems.  I was very fearful of this drug at first, as there is a possibility that I have some minor blockage ( negative stress test ) and people with coronary artery blockage are advised not to take this drug.

The doctor had desired that I get a hearth catheterization to make sure, but without insurance it is too expensive.  He said, the stress test only showed minor blockage so continued me on the Flecainide.  I go for long strenuous bike rides or walks daily, with no problems.  I worried at first, but have had no serious side effects other than some occaisional dizziness ( none recently ).  The worst problem I have is like what underinformed said.  I have difficulty remembering to take the second pill.  I actually completely forgot one time, and did not suffer any serious problems.
I still fear this drug somewhat, but am getting more and more satisfied with it. I simply wish I could throw all my pills away!

[underinformed35]

I am with Kenny, I wish I could just throw all the pills away!! I am now post pacemaker and still having to take medication!! I am not on Flecainide but am taking 50 mg of Atenolol daily. I am just really wishing that I could be without medication!