Opinions please, I know we arent docs, just wondering if I should shut up and b a good patient or push for my wishes:
Ive had PAF close to 5 yr( I think, lol), getting less and less frequent. My last episode was spring 2018. I was taking Flecainide as a pip, and metoprolol twice daily. 4 mo ago I asked to go back on Flec as I was having some ectopics which I thought was stress over my upcoming knee replacement and doc put me on flec 50 mg twice daily. I got thru all the stress of surgery( twice unfortunately) so at my cardiologist followup, I asked to go off Flec and he said to cut dose in half for a week then stop it. A week after stopping it, my apple watch records tachycardia on 2 nights lasting about 30 min each, no a fib. Heart rate normally 60, it stayed around 120. As my a fib is very symptomatic, I dont think I was in a fib. So a call to doc and of course he wants me back on flec, which I did. I go get an ekg next week. Im pretty sure it will be fine. Im not having any more tachycardia. My primary doc who is an integrative doc thought I should have cut back flecainide over longer period than a week, like a month. I really dont want to b on an anti- arrhythmic drug long term unless my a fib is getting worse, so my gut says to push for getting back off it. My husband thinks Im nuts for questioning the almighty cardiologist. Opinions please. Sorry this is so long😩😉
Well you know what I think of almighty cardiologists!!! They can go and be almighty around someone else, but not me! We are all equal in this world. So I agree with you there.
I believe that after stopping drugs your body needs time to adjust to being without the restraint of them. I think I would have sat out the days when you had the episodes of tachy and seen how I got on as days went by.
I think you are right. It scared me and I think I over reacted. I will wait and make sure my ekg is good then let them know Im wanting to try it again. I have no issue with flecainide, jyst want to save it for if/ when I really need it.
I think a slower weaning off is the ideal. Drs aren’t brilliant with that in my experience as a Complementary Therapist, when I’ve listened to patients with other drugs. I think some Drs just do the ‘usual thing’, others think more 😜
I’ve been put on Flecainaide 50mg x2 and Bisoprolol 1.25mg. My heart rat can go from 54 -74 when not doing anything 😳
Yes my cardiologist is a strange one, but we are limited in our area unless I want to drive a long distance. My EP was really progressive and helpful until he learned I wasnt interested in ablation. My cardiologist initially was very anti pip, and Ive convinced him to give that a go with me. Im a retired nurse, so he probably is thinking “ give her what she wants so she will quit calling”😂😂😂
I have paf and am taking bisop 2.5mg daily. It makes me a little tired and breatless on exercise. I told the medics this but was never offered Flec. I have no other heart or ill health condition.
When I reduced my flecainide from 100 bd to 50 bd I did it very slowly ( retired nurse too). My last episode was 2013.
I had a month at 50 am 100 at night and then 75 at night for at least 2 weeks.
I've had no other interventions and half of me would like to reduce further but then as I am 75 and have no side effects common sense says why rock the boat?
All 3 of my episodes I ended up in A and E. Though no need I suspect just buck passing by medics. First twice same ambulance crew!!No chest pain but pulse 180 -200. Rang out of hours docs and advised to go on one occasion
Did have immediate cardioversion on day of diagnosis and was put on bisoprolol then had another episode a month later and flecainide added 100 twice a day. Had to stop bisoprolol dropped heart rate too much in 2011. Just apixaban and flecainide now. Still get odd runs of tachycardia for no reason but if I breathe slowly they soon settle. No ablation.
I am now much less anxious than I was before I was diagnosed with AF. The probs with anxiety felt far worse than having a physical ailment!
I have had prob 4 real episodes in 18 months. Three times in A @E where they just monitor me until I returned to NSR. Once they gave me 5mg of bisop.
The cardio I saw first time was not very helpful and told me not to worry about it and take the bisop. I stopped seeing him and saw a much better cardio who gave me the EP referal.
The bisop is not too bad but it hasn't stopped the attacks. It makes me breathless on excitement/sometimes exercise and anxiety gives me problems.
So, the question is why do they not offer me Flec or PIP ? I am otherwise a healthy 61 yr old.
I have continued to take 2 x 100mg even though for 2 ½ years since my last ablation I have had a much better time.
It sounds like you are different to me because I have no issue with continuing with taking medication.
On that subject I am not aware of any major long term consequences with taking Flecainide. I have been taking taking it for nearly 30 years so no doubt if there are any issues it is too late for me anyway.
I am hoping to reduce my Flecainide next year. How you do that, I think depends on how long you have been on it and at what level and for me that will be the right approach irrespective of what the 'almighty cardiologist' says.
I have been on 200mgs/day for 6 years and I will be reducing it (subject to learning more in the meantime) over at least 12 months with the first hundred over 9 months and the last 100 over 3-6 months; I may well follow Bagrat and take more of the reduced dose in the evening than the morning as the former including the night was a bad AF time for me formerly.
When I reduced it was sudden, but the circumstances were different. At an annual cardiologist check up I was found to be in persistent AF, confirmed by a holter monitor. The cardiologist's attitude was one of puzzlement. ,"Have you thought about diltiazem?".. he said. So for a period I thought about diltiazem, looking it up, seeing it was calcium channel blocker, but not actually knowing what a calcium channel is, or knowing what the advantages and disadvantages of having it blocked were.
A few days later. I saw the AF specialist doctor in the medical practice which includes my village. He's served on many national AF committees and has a much greater knowledge of AF than many specialists I've seen.
He confirmed I wás in persistent AF, and advised that I stop talking Flecainide. I was taking 150mg twice a day.. Seeing my hesitancy be told me just to stop it, adding that not taking it wouldn't kill me. And so I just stopped and I'm still here 4 years later, and I'm still in persistent AF, every minute of every day. As for the diltiazem, he advised against it. As for the specialists I've been handed back to the care of my GPs who do a better job of caring for me.
There is no escape and we can't throw ourselves on the beneficence of a higher power like gods and doctors, and it is down to us..... Example: I had Cyberknife for prostate a cancer in 2017 and was told it could cause double incontinence for life and do you want to go ahead and possibly end up in nappies permanently ? After much research I decided to go ahead and it worked great. My PSA (Prostate Specific Antigen) score, came down from a rapidly increasing 6.4 to 0.7 as at now.. I was lucky but I made sure the odds were in my favour... So these decisions are ours, and ours alone, and there is no escaping them, and we simply have to get fully informed of all the variables and then roll the dice..... Bit like getting married..
I agree. In my mind, I think my heart deserves the opportunity to be trusted to behave itself until proven otherwise. If I start having regular a fib, I will b the first to invite flecainide to the party. I guess I just needed some reassurance from knowledgable people here that Im not crazy. I did roll the dice well in the marriage department. 41 yr of good times but he thinks Im a little crazy over the medication subject. Old nurses are difficult customers! Thanks for your input, it helped alot👍🏻
Sound like a good plan... Most men are quick to categorize women as neurotic pill poppers with Stonehenge style pagan beliefs, but I have definitely improved with advice on water and magnesium that I picked up from ladies too on this forum.... I think water is a definite, but the magnesium may just be a fortunate coincidence inside a period of wellness... Does no harm so I pop 200mg a day... Yes I moved fast on the cancer, but with A.Flutter there is no rush... "Sufficient unto the day is the evil thereof"
I tried to reduce my 2 x 100mg Flecainide with my EP’s approval some years ago. This made my GP very nervous and my cardiologist raise his eyebrows!
I tried twice - first time was definitely too sudden a change from 200 to 150 to 100 within 2 weeks and my heart went bonkers with PVC’s and mild tachycardia. The second time was some months later and I literally nibbled 25mg off my tablet in the mornings - with the same result of numerous PVC’s. On cardiologist’s advice, I gave up and went back, unhappily, to original dose.
My layman’s explanation is that the heart gets irritable and reacts to such drug changes and there is a small part of me that wishes I had kept going the second time. Bagrat had great success going down gradually but, we are all different. BTW, my EP thought trying to reduce was a very good idea, just like your primary doc.
You know more about you and how you react to drugs than the cardiologist does. They have a tendency to treat everyone the same and as we all know, we are all different! Good luck with whatever you decide. I found that flecainide taken regularly failed to prevent episodes and works better for me as a PIP even though I get more episodes- they never last very long when taking flecainide (often topped up with bisoprolol).
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Yes, I was doing fine before with flecainide as pip. I take low dose betablocker twice daily which keeps my blood pressure from creeping up.
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I had to stop the lowest dose of bisoprolol taken daily after three days, as it brought my heart rate down dangerously low! As we know (but medics don't seem to) we are all different! It's useful when I have an AF episode and my heart rate goes over 140 or so and I want to get things sorted quickly- my episodes now last between one and two hours, so not that much of a problem.
My cardiologist said to me " I am a plumber and what you need is an electrician ". Then realising that 100g twice a day of fleicanide and 1.25 g of bisopropol daily might not be the correct solution , I went the electrician's route. Both medicines didn't do me any good. Bisopropol gave me various side effects and fleicanide certainly did not work as PIP. The electrician persuaded me that I was a good candidate for ablation and I had an ablation 1 year ago. Chucked both medicines in the bin and haven't felt better for many a year. One may never be "cured" so I think it's best to enjoy life to the full whilst you can which what I am presently doing. Wish you all well in your AF challenges in 2020 .
Push for your wishes 100%. I look at it like this... I think about and research my health concerns 100x more than my Dr (he thinks about me 10 minutes during a bi-annial visit!). If he won't talk, listen, explain and respond then I'd move on. I'm in charge of my health - he's an assistant. If we screw up, I die, not him.
Thankyou so much! Glad to hear you are doing great⭐️
When my cardiologist prescribed 50mg Flec & 5mg Apixaban both twice daily after just one episode of rapid AF which left me symptomatic with SVT, ectopics, dizziness, he advised I should take the drugs for life as for many patients this would keep further episodes at bay. 18 months on, so far, so good. I have no side effects, apart from interesting dreams & I’m happy to carry on. Over the 18months I’ve been aware of a couple of 30 min breakthroughs of AF, odd ectopics here & there & a few runs of SVT, but generally feel great.
How is the knee coming along?
Pat x
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Knee is coming along well. I am getting back to my “ normal” life, which feels good. Thanks for your reply, my husband thinks I should leave well enough alone re flecainide. I too have crazy dreams, lol.
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