FLECAINIDE: first dose begins at home or hospital?

[Bon-Bon]

How prevalent is it for some paitents to be prescribed Flecainide for PVC's by their doctors / cardiologists and told to go home and take their first dose and I'll see you this time next year, as I was told; instead, of having the patient admitted for hospital or clinical observation / testing in order to see how their body responds to it first?

In my case, I declined the Flecainide for various reasons.

Bon-Bon

[Brooke_38]

The decision to admit patients to start antiarrhythmic medication is not always done, with the exception of Tikosyn which hospitalization for a minimum of 3 days is required by the FDA.

For those who are prescribed Flecainide, Rhythmol, Sotolol, and a few others an event monitor is a must for at least the first 5 days taking it. 2 hours after taking your prescribed dose a recording is done and transmitted via telephone for review. The QT interval is then examined and if you are not told to discontinue you should proceed to take your next dose, which is usually 12 hrs later.

For those who have been given a prescription, no monitor, and told "I'll see you this time next year" I suggest advocating for yourselves and mentioning that this medication is not to be taken lightly, like dispensing an Advil.  There are serious risks and side effects that need to be closely monitored by the cardiologist. If monitoring is being done, this can be safely started at home.

[Bon-Bon]

MY EP or Cardiologist did not mention nor suggest I wear a monitor during any period of time while beginning treatment even when I asked.  He did not feel it necessary.  I felt I should be monitored; so,  I did not have a very good feeling about it and decided (in my case) not to take the Flecainide.  My husband worked late at that time and I knew there would not be anyone home for long hours and I was concerned about that.

Thank you so very much for your informative response.  I very much appreciate you and the knowledge you have.  Thank you for helping us all.  

By the way, what better day than today to tell you that "WE LOVE YOU!!!   Happy Valentines Day Brooke!  

Bon-Bon

[twinbee]

My EP has always insisted on putting me in the hospital whenever she changed my meds. I asked her about monitoring me at home and she said no way. Thank God she feels that way because when I was put on Rhythmol I had a severe and rare reaction and ended up in the ICU for a couple of days.

[Brooke_38]

Bon-Bon: Thank you for your kind thoughts...I am a true believer and feel that, "the most effective medicine for the sickness of self-pity is to loose ourselves in the service of others." It does my heart good to offer whatever I can. "I LOVE YOU ALL" too!

twinbee: Glad to hear that your EP is on top of your case but sorry to hear how you responded to Rythmol:(

It is always best to ere on the side of caution. It is also best to go with your gut instinct. If something doesn't feel right, it probably isn't right. We have to advocate for ourselves and question everything!

[kevk]

I started Flecainide at home after my secound shock from my ICD.  I take 150 mg 2xday for SVT and I have been shock free for thirteen years. So far it has worked well for me but everyone is different.  It is scary when you read the side effects of these drugs, They can be very dangerous.

I wore an event monitor for thirty days.

[banglamom]

I lived in a very remote area.  My cardiologist called in the prescription to my local pharmacy.  I was pretty nervous about it, being completely UNmonitered.  The first day, I took half the dose to be careful.  It was the BEST day I had in about aYEAR.  It was the first time I had a reasonable rate for MONTHS!..Amazing  to feel so good.  So, the nxt day.. I just took what they said.  It kept getting slower and slower (my rate).  After a couple hours, I figured I was in trouble.  Thankfully, I was in my office (in the hospital around the corner from the ER).  I told my coworker that I was getting increasingly symptomatic.  My heart DID stop completely, but a md and 3 nurses saw it happen and they already knew the history.  They were on it immediately.  There was likely never a better code- and with nurses who cared as much as they did.  I spent the next couple days in ICU.  Now, I still take all those meds, but my pacemaker protects me from that happening everyday.  Flecainide was the first to work at all after LOTS of failed attempts.  After my start though, I would recommend starting in the hosp.  Be careful, but it just might be the thing you have been looking for a long time.  Take care!

[Bon-Bon]

Thank you so very much for taking the time to share your experiences with me.

Blessings and pleasant thoughts to all.
Bon-Bon  

[SooZeeATL]

I'm not sure about Flecainide for PVCs but I do know it does help afib. Usually I get tons of PVCs before I go into afib. As to your question, I started Flecainide at home but I had already failed a lower dose of Rhyhmol and couldn't tolerate a higher dose of Rhyhmol or start Sotalol because my resting heart rate is too low.

I left my cardiologist and started with an EC who immediately started me on Flecainide at 100mg twice a day. I had to come in for an EKG two days after I started. I also had an MRI of my heart, stress test, and echo the week before starting Flecainide. I couldn't function on the higher dose (100mg bid) so I ended up taking 50mg tid. I have regular EKGs and echos performed.

I'm healthy with no real heart issues other than afib. Flecainide has been a wonder drug for me until just recently when afib started breaking through for about 2 weeks out of the month. The only side effect I've really noticed is that from day one I've had wild, vivid dreams every single night. I wake up and as soon as I fall asleep again, another dream begins.

So, not sure if this helps, but the drug worked for me and I wasn't in the hospital to start taking it but I was closely monitored.

[banglamom]

What did it look like... not tolerating the flecainide?  I just deal with side effects as there seems to be no other option.  Tummy problems, bp/ rate problems?  Did you feel numbness in your hands and face at times?

[SooZeeATL]

Are you asking me what the side effects were of the higher dose of Flecainide? If so, then I felt drugged out of my mind. I was having difficulty functioning at work and couldn't find the energy to work out (which I do almost every night). On the lower dose (50mg tid) I have the wild dreams and it may have slowed down the "works" a bit but nothing else. I've always had low BP and rate (40 while resting) and that has not changed.

However, it's not working for me as well anymore and I'm getting breakthrough afib about 50% of every month. But it's been a good 2 years.

Numbness in your hands and face does not sound right at all. Did it start after  you started to take Flecainide? Have you asked your doctor or pharmacist about it? How long have you been on Flecainide and what is your dose? If I had those symptoms I would not have continued taking it, but each person has their own limits. Wild dreams don't affect my life at all. Numbness is a different story.

[banglamom]

I take 100 2x/ day.  It really gives me a gut ache.  I try to only take it with food.  Some times I throw up anyway.  My hands, face are numb often.  My tongue gets all sore from being bitten and rubbed on my teeth because of the annoying numbness.   Those are NOT the serious side effects that can be seen attimes.. so I figured I just have to let it slide.  I know that I can tolerate a lot.  I tried different meds.. and always more and MORE not just different.  All drugs have side effects.  I have been on most everything but tikosyn and amiodarone.  I don't want to try those.  They are rife with much worse side effects.  I have to put up with it because it makes my day to day living not life threatening.  It was destroying my heart to just go 180+ bpm every day, all the time, ad infinitum.  That was making my whole cardiac function slip.  I hope it won't quit working in a couple years.  I will take more and more if it will help. I've been on it for 14 months now.  It is also not the only drug I take, so it is hard to know which drug it is or if it is a combination of them working together.  I know the interactions more experientially than from textbooks.  Coreg and flec together drop my pressure, but propranolol and flec give me a lot of pauses.  I have got them traced (ekg) in 1st, 2nd, and 3rd degree heart blocks.  That would be a serious side effect except that we already have a safety built in.  I got the pacemaker shortly after starting the flecaininde.  Since we had finally found a drug that helped to slow it down, just had to get the pacer so I could take it.  None of it has been convenient or easy, but... it is what it is.

By the "works"... what is it that is slowed down?  When it comes to dealing with the side effects and adjusting doses as necessary.... my doctors have given me a lot of leeway.  I have been a cardiac nurse for 20 years.  When my pressure drops to 60/30.. I don't go to the dr, I just deal with it.  When my rate runs away in the 200s for a while... I don't go to the md, I just deal with it.  As a nurse, I already do that for other people and so my doctors have given all the options to me as well.  I carry a backpack full of meds.  It rules my life though and I am very weary.  I'm always likking for a better way.  Thanks for discussing with me.

[mammaoftwins]

The FDA recommendation is to be in a hospital under care of a physican when started Flecainide. I was on Flecainde 100 mg, twice daily, and my cardiodoc said I needed to be observed because of the class of this anti-arrythmic. I would never try an anti-arrythmic without observation, especially without testing my kidneys and other blood tests.

Mamma of twins

[banglamom]

I think my doctor didn't do it that way because of the terrible inconvenience factor.  The outcome was, of course, even more inconvenient.  If the setting had been any different, it would have been deadly.  I'm thankful that I had decided to go to work, and to tell my friends, and that they are so good at what they do.  I would still be terrified to take it because of my initial response except that I am now almost 100% paced.  I completely recommend absolute caution.

The inconvenieince was how remote we were.  It would have been a treacherous 3-4 hour drive to get to the hospital.  They were used to my monitering myself to a large degree.  The whole situation was a disaster.  The "silver lining" was that after over 2 years, they finally found SOMETHING that worked to slow me down.  I don't like flecainide, but it works.  That counts for something.  Obviously, not everyone's response is that dramatic, but close monitering seems of the utmost.  Now, I am absolutely protected from the heart slowing down too much (or stopping) as long as my batteries are good.

[underinformed35]

I also started at home without a monitor about four months ago. It went ok.
I just had an infection and it screwed everything up and I had to raise my dose to 100mg twice a day two days ago. I am very nervous now after hearing everybody. I am ok, just a little dizzy and tired. I also have been having very crazy dreams on this medicine. The doctor just told me to call if I had any problems but they did not seem like I should be worried about raising it at all. I have tolerated it very well with the original dose and it has helped a lot. I just hope raising it does not cause issues!

[banglamom]

Seems to me, if this was 4 months ago, you are probably in the clear.  My problem happened on day 2 of taking the medicine.  I have mostly found that the flecainide has worked very well for me.  I hope that you find it successful too.  Meds are complicated from this one on.  Be in communication with your doc as needed... and come here to ask questions.  There is certainly a broad range of experience as the patient represented here on this forum.  Take care.

[underinformed35]

Well I think you are right...I feel like if something was going to happen it would have happened when I first started it, not just from raising the dosage but I am still a little nervous. I started on the lowest dose four months ago and now three days ago I started doubling that. Medicine is just scary sometimes, but this is the only thing that has worked for me at all. I have been having horrible night sweats the last two nights which are freaking me out. Do you think it is related to the dosage increase?

[banglamom]

It could be related.  If you, like me, find that only flecainide impacts rhythms at all... I just have to put up with some annoying side effects because the side effects are not nearly as bad as the problem we are treating.  If I were to insist we try something different because of the side effects.. the next medications are so much worse.  Call and leave a message for your doc to check on the side effects.  If you aren't feeling like you are going to fall over... that is good sign.  You probably won't!  Good luck with it.

[underinformed35]

I agree, it is much better than the alternative. It is a scary medicine but has really helped me. I just noticed that after being on it a few months it did not seem to be working as well as it did at first. That and the fact that I got the infection made my doctor raise the dosage.
Thank you and good luck to you also. It is so nice knowing that I am not the only one out there with these problems. Some days I get so depressed and frustrated because I just want to live my life and not have to consider my heart in everything I do. So it helps me to know that other people are struggling with the same thing!

[woblesox]

Been on Flecainide 100mg twice a day for 17 years for, afib.   Works really well and only really get a short bout of afib id a forget to take one or two.

I have never had any side effects.

[woblesox]

Just to add - still here with no afib and no side effects in 2023. Still taking the flecainide because it works for me.

[banglamom]

I'm sorry for your ongoing battle too.  It IS hard.  Flecainide is no picnic... taken with beta-blockers, calcium channel bockers, and ace in hibitors... it rules my life.  I too get very frustrated having to put my heart at the forefront of all decisions.  I too find some comfort interacting with folks from this forum.  I have never met anybody and a couple are really my friends.  People here understand like none of my own friends and family.  I was glad to find it.  I've heard people say it stopped working as well.  I hope it takes a long time because I am 41 and have years of this to look forward to.  I keep waiiting for a new magic bullet.  We all are and as soon as it's found, we will broadcast it to all.  Watch for the news.  Take care.

[Bon-Bon]

I take this moment to thank each and everyone who has or will post on this poll.  It has been a great help to me.  You have also helped many by sharing your experiences.  I appreciate you all.

Pleasant thoughts to each and everyone.

Blessings,
Bon-Bon

[Tjoyce]

Wanted to say that my husband was given a prescription for flecainide without any monitoring and a couple of months later was rushed to the emergency room in congestive heart failure.  I have read that this can be one of the more serious side effects of this drug but he was not warned or monitored in any way.  I don't understand why the doctor didn't start him on any of the other drugs which don't pose such potentiall risks associated with it.  I read the Johns Hopkins recommendation trying other less risky drugs first.  Now we are going to find a new cardiologist for my husband.

[NurseL]

I have PVC's, hypertension and SVT that currently is well controlled by Atenolol however this med has caused Psoriasis.  Went through a trial and error period with trying different meds and got increasingly ill with side effects (Lisinopril, Cardizem, etc)....saw an EP at the referral of a local cardiologist.  He wants me to start Flecainide 100 mg 2xdly but have reviewed numerous article on this med and considering my past history with reactions to medications (allergic reactions to numerous also not listed) AM TERRIFIED to take this med leading into an ablation which I have opted for.  No monitor mentioned, no hospital stay, just stop atenolol one day start Flecainide the next and see you in 6 weeks for procedure.  He also has only seen one test strip from one year ago when I was in SVT at the local hospital.  Any thoughts..........please respond as am becoming very doubtful over whole situtation!!!  

[SooZeeATL]

I'd find a new EP.

I started Flecainide at home, but was back in the EPs office a few days later for an EKG, then back in again the next week for another EKG, stress test, and echo.

I have afib, which is different than your SVT, but Flecainide (50mg 3Xday) worked great for me with no serious side effects. Just the wild dreams that some people mention. But everyone is different and I was not monitored closely when I started the drug, but compared to what your EP is suggesting, I was!