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?s re propafenone & treatment for different types AF

Posted by Madeline 
?s re propafenone & treatment for different types AF
February 22, 2019 02:57PM
Hi,

I have recently written about the blood thinners I was advised to start on. Now I want to ask about the anti-arrhythmic recommended for me.

I saw the cardiologist 2/14/19. Next day I got thyroid labs he ordered. He did an echo & stress test, which came back normal. When I first saw him in the office, he said he would probably start me on flecainide & stop the carvedilol I was on. Carvedilol was the only thing I have been on since being diagnosed a yr ago bec I did not want to jump into other treatment options until I could explore everything, gain knowledge & adjust thyroid. By the way, I do not have high blood pressure, beta blocker only prescribed bec of afib.

His nurse called today & I was out & it was not the best time for me to talk. She did relate that he now wanted to start me on propafenone 225 mg q.12h. Wanted me to start tomorrow, Saturday, and come in Monday to get an EKG. I told her I had told him I was going on a trip in a couple of weeks & to remind him I would prefer to start the med as soon as I got back in town. I would not be with a family member or personal friend on this trip, so who wants to start a new med & perhaps have things going on & no one around who knew the usual me. Nervous enough to travel by myself as it is.

One, I want to understand why he changed from saying he was going to prescribe flecainide & then today was told it would be propafenone. I think she might have indicated that he thought it was best for me bec of my thyroid condition (no thyroid), but have to take replacement & he had looked at the labs, which I am thinking he might have thought still indicated a bit of high thyroid just bec of TSH (which is not much of an indicator of thyroid levels in one with no thyroid). My FT3 & FT4 indicate a bit low thyroid levels really.

Now, let me say, I am not sure if you still believe in the categories I read about in Hans' book, of vagal, adrenergic or mixed. I bring this up bec treatment is based on your type of AF?. I can see that I fit a bit of both categories bec:

Vagal aspects: My episodes happen most often around food, mostly dinnertime. I almost never get AF in the day, if I do, it is later & around eating or drinking. They do not happen with exercise (I exercise a lot, tho I am not a marathon runner type as many of the vagal types - more moderate overall).

Adrenergic: I am 69 & female, not a young male as in many vagals. I read if vagal, exercise could stop an episode if one tried this as soon as they thought it was coming. Once after getting AF (not before), I tried going up & down the stairs, but it only made my heart beat faster. Unlike a vagal, my episodes are not weekly, they do not happen starting at bedtime & go through the night (tho I did have one that started at dinner & went thru the night). One could say I definitely tend more toward an overactive sympathetic nervous system. I have a fast metabolism, a moderate benign essential tremor in hand, tend toward anxiety & OCD traits. My first afib started bec of hyperthyroidism bec of being thyroidless & my replacement became too high for me, but that is taken care of now.

What do you think of propafenone for one with my description & not sure if I am meant to continue carvedilol 6.25 mg b.i.d. or not (will ask when I call back). Also, does it not seem wise for me to wait & start this when I get back instead of now 2 wks before I am to leave? I will be gone about 7 days. What is 3 more weeks? After all, I was diagnosed a yr ago & went without anything but a beta blocker all this time & during that time ran many experiments on myself with thyroid & beta blocker changes. Now I am keeping everything steady with no changes other than I did start the Xarelto, so I am more covered than I was before. And does it not take time to adjust to propafenone - don't want to be extra tired on my "walking trip." Sometimes I am already tired from the beta blocker, though it has not stopped me from any of my exercise.

I wish I could convey my questions & be more succinct. Hopefully you can deal with the length of all my writing..........sorry, and thank you in advance!
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 07:17PM
Madeline:

I am vagal which means I get my episodes in the evening, also, sometimes they will awaken me toward 5:00 a.m., My EP put me on Propafenone, I take 1 tab. (150mg.) before bedtime, that is all I take, since I get my episodes in the evening that is when I need it. 225 mg. twice a day is a lot, I couldn't take that much, there is a beta blocker in propafenone,. Are you a small or a bigger person? I don't remember if you said how often you get episodes of AF, you sound as if you might be both Vagal and Sympathetic. You said you have no thyroid, is it at all possible that a small amount of thyroid tissue was left? To have your TSH at 0, you must have taken quite a lot of thyroid hormone, I know you look at your free T3 and free T4, but I have found that when my TSH is quite low I tend to be hyper. I have taken Synthroid since I had my thyroid nuked in 1993, that is much easier for me to control than taking the natural thyroid hormones, that tends to go up and down more, but I do have some thyroid tissue left, also it can regrow (not likely but possible)

Taking 225 mg. of Propafenone twice a day will make you tried, since I take mine before going to bed it is ok, but I will say that last summer I took 1 and 1/2 tabs before bedtime (that is the amount my EP wanted me to take) so that was 225 mg. after about a month I would wake up after a couple of hours and my heart was acting weird, it was like it was having a hard time beating, I quit the extra 1/2 of the Propafenone and that stopped. Now that doesn't mean that will affect you that way, I am just telling you how it affected me.

Liz
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 08:37PM
As long as you’re rate controlled via the betas and also anticoagulated, I see no problem with taking your time on the antiarryhtmics. You’re not in any danger from AF in the short term. I was on Propafenone, I think at 125mg BID extended release, with no beta at all and did OK with it. The propafenone does give you the option of discontinuing the BB if your cardiologist is comfortable with the idea, something that really isn’t an option with the flecainide.
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 09:02PM
Wolfpack:

As I told Madeline there is beta blocker in Propafenone.

Liz
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 09:05PM
Quote
Elizabeth
Wolfpack:

As I told Madeline there is beta blocker in Propafenone.

Liz

Yes, Propafenone itself has a beta-blockade effect. It’s about 1/20th the strength of a stand-alone beta. So it’s not much but it is there.
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 10:07PM
Hi Liz,

I am a small person, actually the opposite build of the classic body for heart disease. I am lean from the waist up including my arms. I am 5'4" & 110 lb & wear the smallest sizes in clothes. By the way, I am not small bec of any hyperthyroidism. I am the same weight as I was before my thyroid was removed. I have 5 sisters & we are all lean; it is in our genes as we eat very well. My thyroid was totally removed. I have been on thyroid support groups for years & have read multiple books about thyroid & adrenals. My thyroid levels right now are really very good. When one no longer has a thyroid the TSH is always suppressed I am told. There are many articles about why TSH is useless in some regards other than pituitary stuff. I don't want to debate that here though. My AF episodes are not the kind where they are real strong or make ppl feel like they need to go to the hospital or ER. I seem to have them depending on circumstances (have I been changing my thyroid meds around, my beta blockers around, eating incorrectly, etcwinking smiley it sometimes has been 3 times a month. They may last 6 hr, but they are not bothersome feeling. I would really need to get out my journal I have been keeping to tell you more specifics. I have never had AF in the day before 3-5 pm. Mine are usually at night with or after dinner. I can do fairly heavy cardio exercise with a high heart rate & not experience AF. I conveyed all this to the cardiologist, yet here he is putting me on strong drugs twice a day - I guess I can try it (later tho after my trip) & see what happens & stop if it does not feel right. If he is insistent, I will find someone else again, sigh................

I see most of you talk about your EP. I just went back to a cardiologist since I wanted a yr to explore different thyroid options since that is what I felt got AF started in me. I am beginning to wonder about this cardiologist though - as first he said he would try flecainide on me if tests were okay, but he did say he would stop the beta blocker & I see most of you say that is usually not done. Now, the propafenone at a high dose twice a day. I surely don't want to mess up the parts of me that I think are working pretty well. And I don't want to be fatigued & certainly don't want it to interfere with my exercise which I love.

Thanks also to Wolfpack who agreed since I was on beta blocker & anticoagulant, I could at least wait 3 more weeks before starting this new experiment. I don't know why the cardiologist would not think to allow me that in the first place. Who wants to spend lots of money for a special trip & then have it ruined just bec he could not wait to start me on something that may even stir things up for me. Not a good sign. It is so hard for me to trust so many drs now bec of stuff like this. The cardiologist knows I have gone a yr without even a beta blocker sometimes, much less the fact that I did no anticoagulation other than ginkgo and fish oil & occasionally the 325 aspirin when I had an episode. But now, it is as if I have to start this experiment right away? The first EP I saw at another clinic told me how things could go one way or the other, no certainties. I was fired from that office by the cardiologist tho bec she was out of town the whole month I was on the Holter & her nurse who was not too bright was trying to get me to do stupid stuff like take antacids when the metoprolol caused all kinds of indigestion & nausea right away. I told her I certainly was not taking antacids as I did not have the symptoms until I started the metoprolol. My wonderful endo helped me by prescribing carvedilol instead, which I tolerated much better. It went on like that & the nurse was thrilled when the cardiologist got back & sent me to the EP at their practice who began talking about PVI, and all the drugs. He was very nice tho & not trying to force me into anything. I really liked him, but she (the cardiologist) found out I got a 2nd opinion at another clinic they compete with & dropped me from the clinic. How ego-involved was that? Anyway, now I am seeing this cardiologist at this other clinic. Felt I did not need to see the EP unless I was close to needing the PVI or anti-arrhythmics. I did not expect this cardiologist to want to start me on anti-arrhythmics.

Wolfpack, when do they decide if your propaf. should be extended-release anyway? I wonder why he wants to start me on what you both seem to think is a high dose. It may be bec like a million drs out there, he is so misinformed about thyroid treatment that he thinks I need a lot more to counter that? Did I also say I do not have high BP or high cholesterol (other than my genetically high HDL, the good cholesterol). I don't really have health problems other than being without a thyroid, but I am well replaced now.

Thank you for your input.
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 10:23PM
Propafenone should always be extended release so you can take it 2x/day instead of 3x/day which is a pain in the rear. The only reason I can think of is that the patent only recently expired on the extended release and some cardiologists who may not be current on the insurance side of things still prescribe the “normal” Propafenone so they don’t get complaints from their patients about $100+ dollar copays.
Joe
Re: ?s re propafenone & treatment for different types AF
February 22, 2019 10:42PM
Quote
wolfpack
As long as you’re rate controlled via the betas and also anticoagulated, I see no problem with taking your time on the antiarryhtmics. You’re not in any danger from AF in the short term. I was on Propafenone, I think at 125mg BID extended release, with no beta at all and did OK with it. The propafenone does give you the option of discontinuing the BB if your cardiologist is comfortable with the idea, something that really isn’t an option with the flecainide.

Again, might be an individual thing? My EP is ok with me having stopped atenolol. I was on 50mg 2x/day but he said to reduce it gradually and continue with Flec 50mg 2x/day which i have reduced to 50mg 1x/day in the evening.
He thought with taking Flec my chances of having AF during the year are 50%. If i stop Flec he thought my chances of AF for the year are 50%.
Both without BB.
My thinking is, if i get an AF episode i simply recommence taking BB and more Flec.
Re: ?s re propafenone & treatment for different types AF
February 23, 2019 03:58PM
Madeline:

If your heart rate isn't high when you are in AF, why do you need a beta blocker? That is the last drug I would take, a number of years ago when I first got AF my doctor put me on a beta blocker, I felt terrible, tried and then I got a first degree heart block. I went to a EP I read on my chart that he said my first degree heart block was probably due to the beta blocker and I had to get a pacemaker. He did prescribe Propafenone but 150 mg. once at night. If your doctor is prescribing 225mg. twice a day and you are a small person that is bad, why don't you request the 150mg., actually, I would go to an EP.

Since I only take the Propafenone at night (once) I do not take an extended release.

Liz
Re: ?s re propafenone & treatment for different types AF
February 23, 2019 09:54PM
Liz,

I did not say my heart rate was not high when I was in afib. What maybe you are referring to is that I said I do not have high blood pressure, which is what beta blockers were originally intended for. So when I take them, sometimes if it is too much like what my 1st cardiologist recommended last year, my BP was just in double digits, but she kept saying that was fine, though I thought it odd. I lowered them on my own & my new cardiologist is okay with my dose of carvedilol 6.25 mg twice a day & I am not way down in double digits anymore. My heart rate in afib got pretty high Feb 2018 on the Holter monitor, up to 198 a few times when on too much thyroid & in the ensuing yr while experimenting with different thyroid doses & beta blocker doses, up to 149. I have had my moderate feeling afib about 3x/month. Since December of 2018, I have settled on a lower thyroid dose, so by now it has been almost 3 months on that dose. I had been lowering carvedilol to only 6.25 once a day, so in February I had 3 episodes of AF again. I think that was bec I mistakenly did once a day BB dosing while titrating off BB. When previously I did 3.13 mg twice a day instead of 6.25 once a day I did not have reactive afib as a result.

Now, I am worried about my choices again. I went a yr without seeing a cardiologist & only went back 2/14/19. I went to a cardiologist instead of the EP bec I did not think I had the problem to warrant anti-arrhythmics or ablation, so just wanted to be followed on BB & possibly blood thinner. I was surprised when the cardiologist said he wanted to put me on anti-arr. First he was thinking flecainide, then after seeing my thyroid levels, he came back with that propafenone dose of 225 BID.

Question for all: Do you think I should switch back to an EP in this group instead of trusting this cardiologist? When I first came to this clinic, I saw an EP & he agreed to let me try lowering my thyroid to see if I could control the afib before doing anything else. I asked him if I needed to be followed by him or just by a cardiologist in his group since I did not believe my problem would last & he said I could be followed by a cardiologist if I wanted. I am so confused. He was a Chinese dr & very mild-mannered & sweet & polite & I wonder if I led him to say I did not need to see him & he thought I wanted to see the cardiologist instead. But now, I wonder if I should ask to see him again instead of the cardiologist. But if the cardiologist thought he could not do the anti-arrhythmic drug treatment, why would he have not referred me back to the EP in his group? I am scared of offending again & perhaps being kicked out of this group if I ask to go back to the EP.

All this is so upsetting because first & foremost I know it is my body & my life & I wish I did not have to worry about offending drs in trying to find the best practitioner for my needs. Do you think a cardiologist is okay to stick with in prescribing this anti-arrhythmic for me for the first time? I just don't feel my afib feels that serious other than worrying about a possible stroke. I am really super fit for my age. I can outdo most people in yoga & Pilates classes that are half my age. I can also do very well in an MX4 cardio class recently. Why do I have to feel I have a heart problem that warrants anti-arr & and an EP now? I showed the dr my ekg I took (with Kardia app) after my intense 30-min cardio workout & I had no afib. My echo & stress test were fine too. My BP is good. My cholesterol is good. Won't perhaps my afib settle down once I keep staying steady on this lower thyroid dose. It has been almost 3 months on it now & I will keep my afib journal & see what happens from March-onward. Do I even really want to tamper with things yet by starting that propafenone?
Re: ?s re propafenone & treatment for different types AF
February 23, 2019 10:32PM
Madeline:

The only thing Beta Blockers are used for in AF is if you have a high heart rate, otherwise it doesn't stop it. An anti-arrhythmic drug is used to shorten or stop an episode of AF, that is what Propafenone is for. You could use an anti-arrhythmic drug as a pill-in-the-pocket, take it only when you get an episode of AF. I have done what another poster has said he does which is when AF starts take your tab. of Propafenone and chew it followed by a glass of water. So you would be taking your blood thinner only-- unless you need the beta blocker, and you could try just taking the Propafenone only when you get an episode. At least you could try this approach. I would eventually seek out an EP.

Liz



Edited 1 time(s). Last edit at 02/23/2019 10:33PM by Elizabeth.
Re: ?s re propafenone & treatment for different types AF
February 23, 2019 10:42PM
Liz offers good advice.

And don’t ever worry about offending a doctor. Always remember who’s in charge. That’s you.
Re: ?s re propafenone & treatment for different types AF
February 24, 2019 12:56PM
I understand the difference btw rate & rhythm control & which drugs are used for what.

That said, is there nothing else to say about what I wrote? I posted my ht rates in AF a few x over the yr. Is that what you call high? The dr knows my BP is high at his office (145/85), but I showed him my Kardia records & how it is good other times. They know all that, but they still want me on BBs - why? And can I really ask him if I can try PIP already? How does your Dr like it when you try to question his lead & instead you try to prescribe for yourself?

Believe me, I come in to dr appts fully informed with things to show them, things to ask them. I brought my afib book, my kardia app records & EKGs & BPs I have been recording as proof of my status BP&AF-wise. I had a list of questions, things I had gathered from the book, my experiences, my readings here too. I take a recorder to tape them so I can play it back later.

He was pretty good about listening & answered some, but there is so little time to get the questions posed, much less to get him to really read them & answer them fully. It is a fine line not to cross trying to get them in your corner, to respect you & advocate for you the way you do for yourself.

There are 2 large heart clinics here. I was ousted from the 1st one for not taking every single bit of advice she posed in 2 months' time & bec she found out I went to the other clinic for a 2nd opinion - they had to request the Holter records from her. At the 2nd clinic I first went to an EP to get his opinion, but I certainly did not feel I was at any stage for anything drastic yet - as all the Rx plans had been described to me & I read more about it all. I asked that EP if I should go to a cardiologist in their group the next time I came bec I did not think I was going to do any of the EP drugs. He said that would be fine. I have done that. I went to this cardiologist last yr 1 time, did not return for a yr while I experimented & studied. So I just returned to him for the 2nd time. If I switch back to the EP in their group, how would that look even to the EP to see how I am yo-yo ing around their office. I am going to lose respect & credibility if I show them I don't trust any of them. If this group fires me, I don't know where to go next.

I only went to the cardiologist again this year bec I thought they would be satisfied with me just taking the blood thinner. I did not expect to be put on anti-arrrhythmics. When do you really feel you need to go to the EP instead? Does anyone here go to a cardiologist when they are at the stage of being prescribed anti-arrhythmics & the like? Are they not to be trusted in starting a pt on those drugs? Is it dangerous for me not to be under the care of the EP instead if I am going to try these drugs?
Joe
Re: ?s re propafenone & treatment for different types AF
February 24, 2019 05:23PM
Quote
Madeline
How does your Dr like it when you try to question his lead & instead you try to prescribe for yourself?

I did after he told me his suggestion. He agreed with me and prescribed.
Three different doctors i saw said that they advise but the decision as to what path to take is mine.
Re: ?s re propafenone & treatment for different types AF
February 24, 2019 07:15PM
Quote
Madeline
Question for all: Do you think I should switch back to an EP in this group instead of trusting this cardiologist?

Yes, without question you should see an EP instead of a general cardiologist. It's not so much a matter of trust as it is expertise in the field that affects you most. I'm not going to say it's dangerous to be seeing a general cardiologist instead of an EP, but I will say it's not optimal. Why would you want to limit the expertise and experience of your provider? You want the best you can get, right?

From everything you've told us I don't think holding out for just taking an anticoagulant is a realistic goal for you. You're going to need to choose drugs, ablation, or a Maze procedure. Those are your broad choices. And by drugs I mean antiarrhythmics, rate control, and anticoagulants -- all three. I know it's not a good menu of choices, but that's what's available to you in 2019. Personally, I would recommend spending some time finding the best EP you can find within an hour or two of where you live and schedule an appointment with them to review your situation. It doesn't have to be the same practice you're seeing now.
Re: ?s re propafenone & treatment for different types AF
February 25, 2019 03:12PM
I got a call from the cardiologist's office. Unfortunately I was at the gym & kept losing connection. But I got some things & want to ask you a question before I call them back.

She told me the dr wanted me to start propaf. ASAP bec I have parox afib (wh I have had a yr w/o this med). She also said he intended for me to stop the carvedilol when I started the propaf. She only said that after I asked her about the carvedilol. When I tried asking her if he said to titrate carefully off the beta blocker, she did not know, just said he said to drop it when I start the other. She said she would ask him. I believe she also said this would make me less tired than the carvedilol (which has been 6.25 mg 2x a day- sometimes I am tired fr it, but it is not that much of a bother in that regard. I had other issues tho w/taking the carvedilol as far as some difference in balance, ototoxicity as I have a tumor & total deafness in one ear already)

Does this sound right?

I still am not going to do this before I go out of town in a week & a half. I was not able to get a connection long enough to get answers to more of my questions.

I still want to ask him if propafenone turns out to be pro-arrhythmic or something else bad, can it easily get back to normal if I just stop it, or will it mean I will have issues trying to regain my previously fairly stable state?
Re: ?s re propafenone & treatment for different types AF
February 28, 2019 01:11PM
I had a question about Propafenone, as I am considering it for pill-in-pocket: if it has 1/20 beta blocker of standard dose, why are there warnings and issues associated with breathing and bradycardia? I assumed this was due to the beta blocker component. Or maybe 1/20 is still a lot for someone with those issues. Maybe you can ask about this also if no one knows.
.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 02:00PM
Quote
wolfpack
Propafenone should always be extended release so you can take it 2x/day instead of 3x/day which is a pain in the rear. The only reason I can think of is that the patent only recently expired on the extended release and some cardiologists who may not be current on the insurance side of things still prescribe the “normal” Propafenone so they don’t get complaints from their patients about $100+ dollar copays.

Wolfpack,

My dr called in a script for propafenone sr, but it was not covered by insurance, so I had to get the 3x/day tablets. You said you took this before - are the tablets big or easy to swallow? And I read one should take it every 8 hr. That would mean I would need to take it 6 am, 2 pm, 10 pm bec if I start any later I would have to stay up at night to take the last dose beyond 10 pm. I don't like any of this. I have to take my thyroid medicine 1st thing in morn before getting out of bed already. I wonder if this poses any problem of taking all of this at the same time & I don't necessarily take my thyroid meds right at 6 am every day either. How strict is this every 8 hr thing?

Also, I see where you said the patent had recently expired. I wonder how long it will take Medicare & my good supplement of United Healthcare AARP, Plan F to approve it?

I was just looking up some things about propafenone & Mayo Clinic had some strong things to say about its use, not that I was not told these very things in the past by an EP, but Mayo's words were pretty strong "....There is a chance that propafenone may cause new or make worse existing heart rhythm problems when it is used. Since it has been shown to cause severe problems in some patients, propafenone is only used to treat serious heart rhythm problems." (I have been checked out by echo & stress test for structural abnormalities, so I know about that aspect, but still.......) Well, is all atrial fibrillation under the umbrella of SERIOUS heart rhythm problems?

I lean more towards being vagal in that I experience AF mostly at dinnertime & exercise does not bring on my AF. I wonder why the cardiologist wants to start me at 150 mg 3x/day instead of perhaps just at bedtime or the PIP approach. Maybe he thinks for starters, I need to first get strong control.

I am not starting this drug for another 2 weeks, but still trying to assess how I feel about the prescription. I did also get an appointment with an EP at the same clinic as my cardiologist on April 3rd, about a week before I am scheduled to go back to the cardiologist. I asked the cardiologist's nurse about whether it was usual for a cardiologist to start a patient on anti-arrhythmics instead of referring on to the EP, and she said they often will start the drugs & refer over if the patient has difficulties. I should have time to be on the propafenone of 2 1/2 wks before the EP appt. I am so skeptical of what propafenone will do to me. I am prone to headaches, which have been under pretty good control for yrs on my previous dose of thyroid meds. One of the common side effects from propafenone was headaches & multiple others I don't need. I am also in pretty good health & shape & I am so fearful that they are going to mess up a fairly good thing.

Can you answer some of this & also tell me how you did starting out? Thanks.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 02:18PM
Quote
Madeline
How strict is this every 8 hr thing?

Eight hours is optimal but an hour or two one way or another won't do any harm. It's not a real time sensitive drug.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 08:14PM
I tolerated Propafenone just fine. I know the published info you read can sound pretty scary, but the truth is Propafenone (and flecainide) are really more the “lightweight” anti-arrhythmics. It’s safe to start them outside of a hospital. Neither one really prolongs the QT interval which is the big risk factor for dangerous (ventricular) arrhythmias. Worst case with either Propafenone or flec (more so the flec) is you get flutter.

Sorry your insurance balked at the extended release. Morning and night isn’t a problem. You’ll just have to remember to carry a pill during the day when you’re out and about. I did it for the few months I was on it. As for the tablet size, they’re no bigger than an aspirin.



Edited 1 time(s). Last edit at 03/01/2019 08:19PM by wolfpack.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 08:45PM
Quote
wolfpack
I tolerated Propafenone just fine. I know the published info you read can sound pretty scary, but the truth is Propafenone (and flecainide) are really more the “lightweight” anti-arrhythmics. It’s safe to start them outside of a hospital. Neither one really prolongs the QT interval which is the big risk factor for dangerous (ventricular) arrhythmias. Worst case with either Propafenone or flec (more so the flec) is you get flutter.

Sorry your insurance balked at the extended release. Morning and night isn’t a problem. You’ll just have to remember to carry a pill during the day when you’re out and about. I did it for the few months I was on it. As for the tablet size, they’re no bigger than an aspirin.

Thank you, Wolfpack. That helps to soothe my mind. I have read that ventricular problems are the serious ones. I do not understand QT intervals, but what you said is relieving. Also to know about the flec & the flutter (since I do have atrial flutter also on past Holter).

Now, I wonder why you only had to be on it a few months & what you are doing instead?
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 09:09PM
I was on it for about 3 months while I waited for an ablation in 2015, then I stopped it (actually 2 days before the procedure).

QT interval is the distance (time on an EKG) between the start of the QRS complex (the big spike) and the T-wave that follows it. It’s the time it takes for your ventricles to repolarize electrically. It should be fairly short, like 400 milliseconds, and get shorter with exercise and increasing heart rate. That’s all normal. If gets too long then there’s a risk that other cells in the ventricles could take over the rhythm in the heart’s lower chambers and that’s really bad. It can lead to ventricular tachycardia or, worse, ventricular fibrillation. Those are medical emergencies.

That’s not going to happen with Propafenone, especially in the context of an otherwise healthy heart. I totally agree with your wait strategy if you’re rate controlled and anticoagulated. AARs should bring you back to the comfort of NSR but there is absolutely no need to rush into it. You’re talking about two weeks, not two years. Not a big deal.



Edited 3 time(s). Last edit at 03/01/2019 09:11PM by wolfpack.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 09:21PM
Thank you Wolfpack. And thank you Carey too for letting me know no need to stress about exact 8-hr spacing of my t.i.d. dosing. I have an idea that hopefully I will calm down (about all my fears from what I read about these drugs and AF) once I actually start on something and especially if it goes well & I don't get any more afib.

Oh, so WP (can I just say that instead of Wolfpack) I am assuming you have no more afib since your ablation. If so, how long has it been & was it done by the Dr. Natale in Austin? When does a person consider that route? Last year the EP I was first sent to (before I could really believe my afib was not just caused by my thyroid dose) definitely implied that ablation seemed to offer the best deal (those were not his exact words of course), but you get the idea.

My afib is fairly frequent, but tolerable & never makes me think I need to go to the hospital. However, the most of why it scares me is because I can't believe it is still coming & I have not beaten it, so I realize what may be down the pike if I don't get it under control soon.
Re: ?s re propafenone & treatment for different types AF
March 01, 2019 10:11PM
I had two breakthrough episodes last year that I attribute to over supplementing iodine.

My first, and only, ablation was done at Duke University because I live in North Carolina. It was a 20 minute drive. When I need another one, I will go to Texas.

You consider it when it’s right for you. In my case, at age 41, there was no question. AAR drugs won’t work forever and can have bad side effects, especially as you “graduate” to the heavier-duty ones. No way for me. I went the ablation route ASAP. I’ll do it again, but with more forethought and information gleaned from this wonderful site.



Edited 1 time(s). Last edit at 03/01/2019 10:15PM by wolfpack.
Re: ?s re propafenone & treatment for different types AF
March 02, 2019 12:29AM
So with my age being 69, how long would be too long to be on the anti-arrhythmic’s before considering ablation? And is ablation considered when the AF feels stronger or just when it happens often as in a few times a month, or when the duration has exceeded a certain length of time?
Re: ?s re propafenone & treatment for different types AF
March 02, 2019 08:46AM
Quote
wolfpack
I tolerated Propafenone just fine. I know the published info you read can sound pretty scary, but the truth is Propafenone (and flecainide) are really more the “lightweight” anti-arrhythmics. It’s safe to start them outside of a hospital. Neither one really prolongs the QT interval which is the big risk factor for dangerous (ventricular) arrhythmias. Worst case with either Propafenone or flec (more so the flec) is you get flutter.
.

Where are you getting this information that it is safe to start them outside of a hospital? Do you mean in an unmonitored setting? The latest study I found which specifically addresses this for PIP strongly advises administering the first dose in a monitored setting to ensure both the safety and efficacy. They found an adverse event rate of 16% including hypotension, proarrhytmia, and bradycardia due to sinus or AV node dysfunction, requiring intervention. In fact, on the basis of their followup data they additionally suggest limited subsequent out-of-hospital monitoring. There are caveats: PIP dosages were large and AV nodal blockers were administered (the latter apparently not routine for this 1c class AAD). Still, why not be safe?

Clinical effectiveness of systematic "pill-in-the -pocket" approach for the management of paroxysmal atrial fibrillation
Re: ?s re propafenone & treatment for different types AF
March 02, 2019 09:45AM
Quote
safib

Where are you getting this information that it is safe to start them outside of a hospital?

From both my cardiologist and EP. That being said, it’s patient specific. A doctor may choose to use a hospital setting if a patient is extremely fragile or they are starting at a maximum dosage, but in the majority of cases that isn’t what’s happening so the medication is just prescribed like any other and taken at home.
Re: ?s re propafenone & treatment for different types AF
March 02, 2019 09:51AM
Quote
Madeline
So with my age being 69, how long would be too long to be on the anti-arrhythmic’s before considering ablation? And is ablation considered when the AF feels stronger or just when it happens often as in a few times a month, or when the duration has exceeded a certain length of time?

There is no time limit, so to speak, concerning AARs and ablation. Most folks’ experience with AARs is that they just stop working at some point, and then you’re faced with the choice of moving up the AAR ladder or trying something else like ablation.

Ablation is warranted in any type of paroxysmal AF, in my opinion, if the patient desires it. There isn’t a checklist that you have to complete. If you want it, ask for it. If you want to try medical management, that’s fine too. It’s a personal decision and should be guided by one’s desire for symptom relief in the longest possible sense.
Re: ?s re propafenone & treatment for different types AF
March 04, 2019 06:45AM
Quote
safib

I tolerated Propafenone just fine. I know the published info you read can sound pretty scary, but the truth is Propafenone (and flecainide) are really more the “lightweight” anti-arrhythmics. It’s safe to start them outside of a hospital. Neither one really prolongs the QT interval which is the big risk factor for dangerous (ventricular) arrhythmias. Worst case with either Propafenone or flec (more so the flec) is you get flutter.
.

Where are you getting this information that it is safe to start them outside of a hospital? Do you mean in an unmonitored setting? The latest study I found which specifically addresses this for PIP strongly advises administering the first dose in a monitored setting to ensure both the safety and efficacy. They found an adverse event rate of 16% including hypotension, proarrhytmia, and bradycardia due to sinus or AV node dysfunction, requiring intervention. In fact, on the basis of their followup data they additionally suggest limited subsequent out-of-hospital monitoring. There are caveats: PIP dosages were large and AV nodal blockers were administered (the latter apparently not routine for this 1c class AAD). Still, why not be safe?

Clinical effectiveness of systematic "pill-in-the -pocket" approach for the management of paroxysmal atrial fibrillation

I agree with Safib here. This is the Conclusion of the above referenced study:
_______________________________________________________________________________________________
Conclusions: An out-of-hospital PIP-AAD treatment strategy can be effective for highly selected patients with symptomatic paroxysmal AF. However, the rate of treatment failure and adverse events are clinically relevant, which limits its wide-spread application.
_______________________________________________________________________________________________

The problem is, although unlikely, is that these Drugs can potentially kill you. Just because we have 9 Afibbers who post about getting along fine with a high dose of Flecainide or Propafenone PIP, doesn't mean the 10th one will. In fact we would never probably know it, if a PIP Pro-Arrythmic event was fatal, especially if it was done in a home setting. The person that knew what happened is no longer with us to tell his/her story. I for one have had a very serious negative reaction to Flecainide at a certain dose. At 200 PIP, I feel queasy and uneasy, when I tried 300, I had trouble moving, because I was so weak. Could only whisper, not speak for about 45 minutes when the concentration of the drug was at its peak. Could not even reach my leg out to try and knock over a trash can to get attention. No one can hear me. I am in the Hospital ER, but due to a paperwork mix-up, the ER staff does not know what is going on, as they lost my EP Doctors instructions. They didn't listen to me when I started getting in trouble. The ER is busy, so I was put on a bed in a side room, while waiting for the Dr. Then after I am in this room, I get worse, and lie there helpless for 30-45 minutes. Finally I regained some strength, and was able to again look out for myself, and then 3 hours later they Cardioverted me, never really knowing what transpired. The ER staff did not understand PIP bolus dosing for Conversion.

On the positive side, I have taken the Drug at lower doses and gotten along fine, at 75mg/2x day, I was fine, Or even 100mg/2x day., and it did sometimes convert me back to NSR, although it took about 24-36 hours for it to work. So I am not saying not to take these Drugs PIP, but why take a risk? Get monitored in a Hospital the 1st time around, or at least slowly titrate up on dosages, to make sure you can handle the PIP dosage.
Re: ?s re propafenone & treatment for different types AF
March 04, 2019 01:01PM
I take Propafenone , 1 tab 150mg., every night before bed, I have for a number of years. I did not take the first dose in a hospital, it could be because I have a pacemaker that I didn't need to, also I take a low dose. Flecainide is a little different, my EP did not like it and prescribed Propafeone, on the low dose I take I have had no problems. I did try a higher dose last summer, my EP always wanted me to take a higher dose, he wanted me to take 1 and 1/2 tabs, I did that for a few weeks then I started waking up a couple of hours after going to sleep and my heart felt weird like it was starting and stopping and slow, I got up and moved around and my heart went back into a steady NSR, it did that for a couple of nights, I figured it probably was the extra Propafenone that was doing it so I quit it and that weird feeling stopped. No drug is completely safe, depends on the amount and your tolerance.

Liz
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