My EP took me off eliquis. But I’m petrified. I’ll have a stroke now.

Posted by kmj126 @kmj126, Jan 1 8:09pm

I’m a 53-year-old female and I heard my first afib episode in October which lasted about eight hours of my converted with mediation. I haven’t had any episode since and I was given to echocardiograms and a two week Holter monitor and the doctor said because my chads score is 1 due to being female that I don’t need the blood thinners anymore. He said if I have another episode that we can further discuss what to do then but I’m definitely afraid right now that I’ll have a stroke. Does anyone that have had one episode of a fib not on a blood thinner?

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Profile picture for kmj126 @kmj126

@foundryrat743 I am going to the er after work to beg for Eliquis. Stories like this make me fear that I’m gonna have a stroke. I thought I’d be OK because my chadsscore was low, but it’s not.

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@kmj126 I agree! That’s why I told you my story. Hope they help you right away! Good luck!☘️

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I went to see two different doctors and I went to an ER. Nobody think that I need the Eliquis so I guess I have to make an appointment for a third one because I’m gonna have a stroke now.

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Profile picture for marybird @marybird

@chickenfarmer I can tell you in my own experience, with a long history of paroxysmal SVT, A-flutter and A-fib, I've never noticed any of these occurring when I drink coffee. I generally have two cups in the morning, and occasionally after dinner if we have a dessert that needs coffee with it. I guess it varies among individuals, but that is my experience.

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@marybird
I think your last sentence says it all to those regarding the question of coffee. Caffeine can affect individuals but not the same for all. What will cause some issues for some will not for others.

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Profile picture for kmj126 @kmj126

I went to see two different doctors and I went to an ER. Nobody think that I need the Eliquis so I guess I have to make an appointment for a third one because I’m gonna have a stroke now.

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@kmj126 I'm sorry that you're having this experience, including an inordinate fear of having a stroke, out of all proportion to your actual risk of having that stroke, at least from the medical history that you have shared on this forum. It's got to be a miserable way to live, with that fear hanging over your head. As you responded to me about the coffee, patients' histories and responses to...well, nearly anything are individual, and a post from one person with a low CHADS2 score reporting evidence of a stroke does NOT automatically mean this will also happen to you.
I know the fear of stroke is very real to you, and it should be addressed, hopefully to put the whole thing in a better perspective so you can go and enjoy your life. The problem with serial visits to doctors and ERs trying to find someone who will prescribe a blood thinner is that these providers don't know you, or anything about you and they're all looking at the established guidelines for blood thinner use, and your medical history falls outside those guidelines. As you know there are risks associated with the use of blood thinners, and the consideration of benefit versus risk for blood thinners is always a consideration for patients who are prescribed these drugs. It's just that with a low CHAD2 score, and your other history at the present, these providers would believe that prescribing a blood thinner to a patient who doesn't need one would make the risks of taking the drug higher than the benefits. I think going to different doctors or facilities to find someone who will prescribe a blood thinner will just result in your frustration and sure won't help with your anxiety on the matter as I doubt you would find a doctor who would prescribe a blood thinner under those circumstances.

But you're worried, scared that you will have a stroke, and as I see it you need reassurance, continuity of care, preferably from a provider who knows you, knows your history and is willing to see you on an ongoing basis, to monitor for ongoing episodes of A-fib. I'd think a cardiologist, or perhaps even a primary care doctor who can work with you over time to keep an eye on your heart rhythm to pick up any new episodes of A-fib or other arrhythmias. That's essentially what we did after my first episode of A-flutter, and it wasn't until 6 years later ( and a lot of other issues, but that's another matter) that they picked up the A-fib again and the cardiologist felt it was time for the Eliquis. If you're symptomatic ( ie, feeling the flutters, dizziness, shortness of breath, etc ) during an arrhythmic event you could contact the physician, go to the ER, or in some way get the arrhythmia documented- at that point if it turns out to be A-fib again they'd likely consider prescribing a blood thinner.
You could have periodic cardiac monitoring over time to see what your heart is doing, especially if you're symptomatic, and you could even monitor your own heart rhythm with a Smart Watch or a Kardia mobile device- this is especially helpful if you're feeling the symptoms of an arrhythmia- and you can even transmit the EKG data to your physician.
Just some suggestions and my best wishes to you that you can get this all straightened out so you can go on with your life without the worries that a stroke is waiting around the corner to get you- because a million to one it's not!

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Get a Kardia Mobile so you can monitor for AFIB. If you have episodes you can show the cardiologist. It will give you peace of mind.

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Profile picture for gloaming @gloaming

@chickenfarmer I understand your position. Here is what I know, or 'think' I know 😀 :

When the left atrium is fibrillating, the circulation of blood is reduced. It can't fill properly by the time the next untimed contraction takes place. One serious outcome of this is that the 'left atrial appendage', a small pouch at upper extreme left of the left atrium, doesn't get flushed out properly with a fresh supply of blood. After a while, still in AF, whether a few minutes or several hours, the pooled and stale blood has begun to clot. Then, by bad luck, or when the heart reverts to normal sinus rhythm, which happens to you almost every time, the new vigorous refilling of the left atrium might cause one or more clots to get washed out of the LAA, and it goes out of the heart on the next ventricular contraction. Where it goes means life, life in a wheelchair or on your back, or death. It can travel to the heart, itself, and cause a heart attack because it blocks the left anterior descending artery. Or it can travel to the brain and give you a nasty stroke. Or, maybe to the lungs. Or to a kidney.

The risk of a stroke from AF rises five times ( X 5) over a normal person's risk at the same age and with a good heart. The risk of a major bleed is somewhat less. When was the last time you had a catastrophic bleed, say from a terrible fall that broke bones and had a sharp bone pierce an artery? Or in a car accident where a limb was almost completely severed? Those events are rare. and even when they do happen, someone nearby will call for help and attempt to stanch the worst of the blood loss. Minor cuts and abrasions don't even figure here. It's just the serious bleeds, and for all of us, it's very remote. But.................you do NOT want a stroke.

Last part of this...sorry, it gets long....and that is that the EP community have established that you can die from an AF related stroke months after a successful ablation or after reverting to normal sinus rhythm and not having any more AF over that long period. It is for this reason that the Watchman device was engineered and is offered to many patients. It seals off the mouth of the LAA and doesn't let any clots issue from it, ever. At that point, with a confirmatory trans-esophageal echocardiogram (TEE), your cardiologist and EP will agree, usually, to let you stop taking Eliquis/Rivaroxaban, maybe with a baby aspirin each day instead. But this depends on your overall risk. You may have other things going on that also raise your risk of a stroke....not just the history of AF.

I hope this very long explanation helps you to situate yourself in this unfortunate condition.

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@gloaming Yes I've heard the 5x stroke risk without Elliquis or other DOAC. My EP has me on 81mg aspirin for years after ablation. Says i should take elliquis if I get an AF spell longer than 4 hrs. i've scoureded medical literature to confirm his guidance. Seems that DOAC Rx is de rigor for most cardiologists. But there are some studies which cast doubt on the 5x rule. ARTESIA is one but there's some controversy there in that the study only looks at subclinical cases which from my reading means that the AF has not been formally diagnosed using an ECG, but is the result of implanted or smartwatch traces. Recent studies- ALONE-AF and OCEAN concludes that folks who've had ablation and are AF free don't have any higher stroke risk from aspirin compared to DOACs and the principal investigator in the ALONE study said that aspirin doens't seem to do much - so it may be consdiered placebo. MAkes sense but curiuos about your statement "EP community have established that you can die from an AF related stroke months after a successful ablation" I can't find studies which reinforce this gudiance. Bottom line: I'll bet the companies who sell Watchman LAA closure device plus thus who sell the (expensive) DOACs are scrambling to find rebuttals to these studies.

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Profile picture for lenmayo @lenmayo

Get a Kardia Mobile so you can monitor for AFIB. If you have episodes you can show the cardiologist. It will give you peace of mind.

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@lenmayo I have one and take my ecg daily. Never been out of sinus yet.

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Profile picture for chickenfarmer @chickenfarmer

@gloaming Yes I've heard the 5x stroke risk without Elliquis or other DOAC. My EP has me on 81mg aspirin for years after ablation. Says i should take elliquis if I get an AF spell longer than 4 hrs. i've scoureded medical literature to confirm his guidance. Seems that DOAC Rx is de rigor for most cardiologists. But there are some studies which cast doubt on the 5x rule. ARTESIA is one but there's some controversy there in that the study only looks at subclinical cases which from my reading means that the AF has not been formally diagnosed using an ECG, but is the result of implanted or smartwatch traces. Recent studies- ALONE-AF and OCEAN concludes that folks who've had ablation and are AF free don't have any higher stroke risk from aspirin compared to DOACs and the principal investigator in the ALONE study said that aspirin doens't seem to do much - so it may be consdiered placebo. MAkes sense but curiuos about your statement "EP community have established that you can die from an AF related stroke months after a successful ablation" I can't find studies which reinforce this gudiance. Bottom line: I'll bet the companies who sell Watchman LAA closure device plus thus who sell the (expensive) DOACs are scrambling to find rebuttals to these studies.

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@chickenfarmer This study, although older, indicates that, at least with their methodology and data, continuing of a DOAC after successful ablation is deemed to be safer for most patients:
https://pmc.ncbi.nlm.nih.gov/articles/PMC9358599/
The ALONE trial is four years earlier in the making, and seems to contradict the earlier findings. As both studies indicate, more studies should follow to try to nail this subject down. Meanwhile, the cautious and prudent approach for practicing EPs in N. America seems to be that patients should consider taking a DOAC, and in some cases for life.

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Hello,kmj126, I doubt that comments from a total stranger will relieve your anxiety, but the "5X" stroke risk w/ AF is highly overblown, since it does not take into consideration YOUR particular history. You are scaring yourself--stop thinking that "I'm gonna have a stroke now" simply because you had 1 episode of AF. The pharmacy industry makes a constant fortune from anticoagulants, and they have convinced cardiologists to push Eliquis etc. on everyone with AF. So if your drs. say you do not need it--believe them. You know there is a bleed risk on anti-coagulants, right? If you had a history of TIA's or strokes, had high blood pressure, diabetes, other conditions that increase stroke risk, or a high CHaDS/Vasc score, your doctors would have prescribed Eliquis (or other anti-coag). A number of doctors now believe that people who have low burden, ie., who only have occasional episodes of AF such as you, do not need anticoagulation because the risk of stroke in that case is so extremely low. My own risk was less than 1%, far less than the scare-statistic of 5% which I'm sure sells lots of Eliquis. (Yes, I am one who chose not to take Eliquis for 14 years because I had only 1 episode every 3-6 months.) Try to calm yourself, take some restorative walks, breathe deeply, pet your dogs and cats, and live your life each day free of fear or pressure about this issue, because anxiety itself will bring on atrial fib episodes. If your AF burden increases in future, believe me, the drs. will be pushing Eliquis on you. I hope the best for you!

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Profile picture for drdianeschneider @drdianeschneider

Hello,kmj126, I doubt that comments from a total stranger will relieve your anxiety, but the "5X" stroke risk w/ AF is highly overblown, since it does not take into consideration YOUR particular history. You are scaring yourself--stop thinking that "I'm gonna have a stroke now" simply because you had 1 episode of AF. The pharmacy industry makes a constant fortune from anticoagulants, and they have convinced cardiologists to push Eliquis etc. on everyone with AF. So if your drs. say you do not need it--believe them. You know there is a bleed risk on anti-coagulants, right? If you had a history of TIA's or strokes, had high blood pressure, diabetes, other conditions that increase stroke risk, or a high CHaDS/Vasc score, your doctors would have prescribed Eliquis (or other anti-coag). A number of doctors now believe that people who have low burden, ie., who only have occasional episodes of AF such as you, do not need anticoagulation because the risk of stroke in that case is so extremely low. My own risk was less than 1%, far less than the scare-statistic of 5% which I'm sure sells lots of Eliquis. (Yes, I am one who chose not to take Eliquis for 14 years because I had only 1 episode every 3-6 months.) Try to calm yourself, take some restorative walks, breathe deeply, pet your dogs and cats, and live your life each day free of fear or pressure about this issue, because anxiety itself will bring on atrial fib episodes. If your AF burden increases in future, believe me, the drs. will be pushing Eliquis on you. I hope the best for you!

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@drdianeschneider My EP aqgrees with your analysis. Also more and more studies cast doubt on the OAC doctrine. ARTESIA, OCEAN and OPEN

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