AF Association
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Is my reasoning reasonable?

Hi everyone!

I have a follow-up/reevaluation appointment with my cardiologist this week and as he is usually in a hurry I'm trying to organize my thoughts before I get there.

Here's the thing: I was diagnosed with paroxysmal AF a few years ago, and told to take an aspirin a day. Then 18 months ago I was told that aspirin was no longer considered effective against blood clots and was put on Xarelto 15 mg at night, as well as Flecainide 100mg morning and night, and Metoprolol. Well, 100 mg x 2 of Flecainide, plus Metoprolol just about knocked me out. When I reported this, the cardio said to reduce the Flecainide by half to 50 mg twice a day. Then, because my heart rate is almost never higher than 80 even without Metoprolol, I decided to discontinue the Metoprolol (which was adding to the debilitating side-effects I was experiencing). When I told the cardio he didn't seem concerned and I never got around to asking him why he prescribed it in the first place.

A few months ago when I was considering foot surgery, he told me that it would be OK to discontinue the Xarelto for "two, even three" days (which makes me wonder if I really need to take it any day). Although I was having frequent ectopics I'm never aware of any AF events, but any time I have an ectopic episode which seems slightly unusual I use my Kardia to see if it's AFib, but always the result is "normal." The ectopics have all but stopped in recent weeks, for no reason I'm aware of.

Since seeing the cardio 5 months ago I have tried taking the 50 mg Flecainide at night only, with the goal of using the daytime dose only as a pill-in-the-pocket. It's been a month since I have needed to take a daytime dose, though I continue with the Xarelto, telling myself that if I did happen to have an undetected AFib event, I'd be protected from stroke by the Xarelto.

The reason I'm posting all this is to ask if any of it makes sense. Am I thinking like a sensible person, or are there some loopholes in my reasoning? Not asking for medical advice of course, but just open to any comments before I see the cardiologist on Wednesday. I plan to tell him what changes I've made and particularly ask for his advice re the Flecainide.

If anyone cares to comment I'll be so appreciative! Thanks!

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If it were me I would not be happy with such vague answers. When I'm prescribed a med I want a clear explanation re why it's necessary. You are entitled to this info. Being busy is not a good reason for not providing a patient with what they need to know. I can't tell you what to do but, if possible, can you get a second opinion? What does your current cardiologist give as a diagnosis and what is his plan of tx? Several unanswered questions here that would make me uncomfortable. Just a thought and just my opinion. Take care and hope you get some clear advice re the direction of your treatment. irina1975

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It’s good you are continuing with AC to prevent stroke

If you have flecanide daily you should have a beta blocker or a calcium blocker with it so not sure why he agreed you could stop metropolol. If you just have flecanide as PIP then it’s ok not to have beta blocker. I’m not a doctor so all this needs checking with him but if it was me And things have been going well I would ask if Flecanide as PIP would be reasonable or if daily is needed

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There quite a few of us on here who don't have a beta blocker with Flecainide. It is great to be well informed but there are individuals for whom no beta blocker is also ok.

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Hi Bagrat

Cardiologists who help our support group explained that it’s ok for PIP but not if you take Flec regularly - if you look at peoples experience elsewhere on recent posts you’ll see why- I haven’t gone into detail as don’t want to be alarmist. Anyone interested can quiz their physician about it and make informed decisions

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I agree RosyG,I was prescribed 100mg twice daily Flecanaide, 3days later went into Atrial Flutter and put back on bisoprolol ,which had been stopped when put on Flec! OK so far since.

Some clarity would be good for forum

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Yes it’s important . Glad you are ok

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I’m prescribed flecainide by my EP as a PIP without a beta blocker. I’ve never had to take one though. I would also think like you and not want to take anything unless absolutely necessary and certainly not if it’s debilitating. I think you’re right to do what you’re doing.

Are you on magnesium? If not, check it out. If you’re having plenty of ectopics it could help you enormously.

Pat

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Demand answers do what i am doing take a set of questions written on paper i have just discovered i had a heart condition i was diagnosed with 9 months ago..

Despite asking my GP on numerous occasions he was too lazy to go through the Cardiologists letters to answer as to why i was put on Perindopril...

If you are not happy with any of your doctors get another or at least get a 2nd opinion i thought i had it down pat but how wrong i was...

Even the specialists were at fault they could not be bothered to explain exactly what was happening too so do not be frightened take as much time as you need..

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I really like your response to Nanfranz. We are on the same page! Sounds like you are a patient's advocate. I have had-and currently have some excellent doctors. And I refuse to return to mediocre ones. It's our right and we need to be our own advocate. We will not get the best and most appropriate treatment and care unless we demand it and refuse to settle for less. We would not return to a car mechanic who caused us more problems than the car had when we took it in for service. Give your health care the same respect. Most doctors are caring and want to to their best by us. And I believe it is getting harder for them as government/Big Pharma etc take more and more control of every country's healthcare system. But as in every profession there are some people who probably should have chosen a different field. I've posted this before but as my late brother used to say re doctors. "Somebody had to graduate last in his class." Don't mean to sound so harsh but mediocre medical care is a soapbox I climb on frequently. We(patients) are just as important and valuable as the doctors treating us. We deserve respect and the best care possible. Don't be intimidated and always demand the best a healthcare professional is able to give you. Whew! I'll be quiet now. Take care stevie11. irina1975

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irina1975

Having experienced some pretty mediocre medical care in the U.K. in the past, I agree with much of what you say, and have said similar here before. But when we talk of respect, rights, demanding the best, this begins to sound more like theory than reality.

Health care professionals work within an organisation which constrains them. They have issues and pressures of their own, maybe health problems too. In my experience, poor care and negligence in health care settings is rare, but when mistakes happen the consequences can be devastating.

Most often when I have seen complaints on elderly care wards, they have come from absent relatives recently arrived on the scene. I am not convinced that being confrontational is always the best way forward

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If it wasn't for us patients,they would have no career or reputation! I just sit it out,with my notebook and pen until I am finished asking questions. They cant physically throw you out!

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Hi wilsond. You're right. They can't take away your notebook and make you leave! When I was still working I used to hear a phrase-humorous but very true!! "If it weren't for the patients we could get our work done.!! "Lot of truth in that one.! Take care. irina1975

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You too Irina, Dawn( wilson.d) stay wellx

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I think every case is different and as treatment is for QOL - quality of life - if you aren’t getting an improved QOL from the meds - why on earth would you want to continue? Quite reasonable thinking.

But - know why these meds are prescribed and consider risks and benefits.

This article is very clear as to the why various treatments are offered, I took Flecainide without Beta Blockers and no one told me otherwise. Flec is a rythm drug and Metoprolol a rate drug.

May I suggest you read through this very informative article giving an overview of AF treatments and then you can discuss with your cardiologist what your next steps might be.

If you still feel unhappy with your consultation then I would say that at your meeting and then ask for a second opinion.

Sadly not all consultants are good at communicating and explaining.

verywell.com/treating-atria...

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CDreamer, thanks so much for taking the time to respond! Yes, I do read up on any medication I'm prescribed and will certainly read the information at the link you provide -- thanks! My cardiologist will probably retire by the end of this year. He's a pleasant enough man, but tends to prescribe higher doses of meds from the start, rather than start with a lower dose and later increase if necessary.

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Hi Nanfranz. If you have time, will you check out my reply to stevie11 re his reply to your question 'Is my reasoning reasonable? Take care. Happy to hear your GP is retiring. LOL Take care. irina1975

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Sorry to be slow in replying! Having an Internet problem today for the first time ever -- the Wi-Fi comes and goes without warning. Anyway . . . thank you, Irina, for taking the time to post your well thought-out comments which are helpful. I'm in the US and old enough to be on a Medicare supplement medical insurance which requires a referral from one's Primary Care Physician (GP) to any specialist (consultant) such as a cardiologist within a particular network. If my Cardiologist was not expected to retire quite soon, I would ask for a referral to another one in the network (which would undoubtedly be in the same building), but will probably wait a while longer until the anticipated retirement is definite. The one I have is the kind who doesn't spent time on explanations unless he's pinned down by the patient (figuratively speaking). I will see him this week and will go as usual with my questions on a sheet of paper.

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Hi CDreamer. I agree re some consultants not communicating well. I am even ok with this if the doc really knows his business but just doesn't have the gift of easy communication. I believe the smart ones realize this and hopefully have a nurse practitioner/cardiac nurse or someone else in the office to pick up the slack. I've worked with some brilliant surgeons who I would let operate on me in a minute but I would not like to try to have a conversation with them on a regular basis. I believe it's not a bad idea to take someone you trust with you on your visit-especially if communication is not one of the doctor's strong points. I have done this on occasion for support even though I can speak for myself. It seems to keep some consultants on their toes. And sometimes we don't feel as well as we need to be to advocate for ourselves. Just an idea but I have found it helpful. Another benefit is 4 ears are better than two and sometimes I don't feel up to remembering what was said. Take care. irina1975

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Hi Nanfranz :-) you don't say whether or not you have raised blood pressure, Metoprolol a beta blocker is used to lower blood pressure as well as blocking the action of certain natural substances in your body so that less strain is put on your heart making it easier to cope with AF .

I too have P-AF and have been prescribed a beta blocker to help control my heart rate and because my blood pressure is high too. I take an anticoagulant, a NOAC similar to the Xarelto which you take to help prevent a stroke. I was not prescribed Flecainide the heart rhythm control drug.

Our medication requirements are all different depending on our age and various medical conditions so what we are prescribed is generally tailored to our specific needs.

The medication I have been prescribed makes sense to me, I know now I will almost certainly need to take an anticoagulant for the rest of my life even if I have only occasional episodes of P-AF. The beta blocker I will probably need to take continuously too for the reasons stated above.

I am not sure why some people with P-AF are prescribed regular doses of a Flecainide while others seem not to be unless their heart rhythm is erratic all the time ,but then that would put them in the class of persistent or permanent AF I would have thought.

I can understand Flecainide being offered as a PIP and I would ask for it myself if I thought I could not get back into NSR on my own but I prefer to keep it in reserve rather than start it too soon.

Nanfranz :-) only you and your doctor know all the details of your health and medication requirements . If I was you I would look up the various medications you are taking and ask yourself does that situation apply to me then armed with a little knowledge discuss it with your doctor.

Based on the little you have told us, in your position I would want to continue taking an anticoagulant and something to control my heart rate like a beta blocker but I would wish to know why at this stage it was necessary to take a rhythm control drug like Flecainide all the time. If you are having problems taking Metoprolol maybe change to another beta blocker.

Edited to Add ] Nan, have you read this information of the NICE guidelines explaining the need for specific drugs..

nice.org.uk/guidance/cg180/...

nice.org.uk/guidance/cg180/...

What NICE says about the need for Rhythm control...

''Consider pharmacological and/or electrical rhythm control for people with atrial fibrillation whose symptoms continue after heart rate has been controlled or for whom a rate-control strategy has not been successful.''

pathways.nice.org.uk/pathwa...

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Thanks, doodle, for your thoughtful comments, which I appreciate ! I just want to add that when prescribed the beta blocker Metoprolol I was already on blood pressure medication (Benicar), which was and still is doing a very good job of keeping it within safe range.

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Hi Nan :-) sometimes just talking these things through with an 'outsider' can put them in perspective. I know what it is like to think things through yourself until they no longer make sense :-)

If you are also on meds for blood pressure and uncertain of the need for all the other meds, I would certainly go through them one by one with your doctor to see if they are all necessary .

It can certainly help to make a note of all the things you wish to ask the cardiologist. Seeing any doctor can be a stressful event and at those times it is easy to forget all the things we wanted to ask. As getting to see a cardiologist in the first place can be a rare event, I think we should make the best of the opportunity when we do.

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Interesting thread, got me thinking

On N.I.C.E. - I found out that they produce evidence based guidelines aimed at GPs, the public and Public Health organisations. That explains why, according to my EP, they are widely ignored by Consultants, whose only obligation is to follow their own departmental policy if treating NHS patients. An example would be Sotalol, widely used as first choice for rhythm control overseas and some consultants here.

On the question of going prepared for consultations. This can work in unpredictable ways. An EP might have an unparalleled international reputation. As long as I knew enough to know that she was not off her game that day, I would trust her to do the right thing, however poor her manner, and would not ask her questions.

With another EP, without any special recommendations, I might well ask probing questions however charming he was.

Turning up for a time-limited NHS appointment, with a shopping list of questions can be counterproductive, though I have often had my own in my pocket, ready to pull out if needed.

Ideally doctor and patient will have good interpersonal skills. And we as patients have to bear in mind that we are not yet interrogating a robot doctor. Most doctors can be manipulated to an extent, most of us in any personal interaction are susceptible to a little charm.

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From my work in the area I can at least confirm one thing. Xarelto (or similar new anticoagulant) is now regarded as much better than aspirin in AF (more effective and safer).

I would go with the list, and make sure you get all the questions in. It is also a good idea to have somebody (reasonably bright helps) so you can remember all the answers, and discuss with them afterwards. Make sure you don't waste appointment time with unnecessary things but make sure you get the answers you need, and that they make sense. You need good straight answers. If the EP does not know the answer he should say so. If he waffles it probably means he don't know but is too arrogant to admit it. I have encountered this frequently, but mainly with junior doctors and registrars.

Be confident but polite, and go for it. It is your health.

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Write down everything in bullet points with space beneath for answers!I find a notebook focusses me and Dr!

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OK I will attempt to clarify the question of flecainide with or without a betablocker.

1/ They are usually prescribed together, either as prophylaxis or PIP.

2/ Flecainide along with most drugs of its type can cause heart rhythm problems if the dose is too high.

3/ The betablocker limits this side effect. Only a tiny amount is needed for this benefit.

4/ Dr Sanjay Gupta in one of his videos says that taking a small dose of a betablocker, even for a few weeks, can calm the heart down and fight inflammation.

But. A slow heart rate due to a betablocker especially at night can give problems. So, many people end up on small doses of only flecainide and take a little betablocker when needed. I did that yesterday when really stressed.

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Hi Dawn. Right on. I believe the notebook and writing answers sends the message that we are interested in what the doctor is saying, are listening attentively, and want to take an active part in our care. irina1975

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You mention only cardiologist although you were diagnosed with paroxysmal AF a few years ago. Unless your cardiologist is also an EP, I find it strange that you have not had a consultation with an EP. Luckily, your body has not fast-tracked to persistent AF.

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