Anticoagulation, again

This seems to be a regular topic. Being new to afib, I have been reading as much as possible and still find myself on the fence as to whether or not to use Xarelto.

June of this year I experienced at least 3 episodes of afib that lasted around 2-3 hours. The last episode I went to the ER so I could find out exactly what was wrong with me as to this point I had no idea and was still wearing a event monitor.

In the ER, they gave me a drug and quickly came out of afib. From that point I was prescribed diltiazem, flecainide, and xarelto.

I went and saw cardiologist for first time. She said that I didn't really need thinners but she said if it was her mother, she would tell her to take them. Then I saw a EP and he said take it and take flecainide as pill in pocket although he didn't think it would work.

I took the diltiazem for about 2 weeks and then stopped. My normal blood pressure is around 115/70, just a bit overweight, lipids are ok, no diabetes issues, stay active, and 57 yr old.

Here I am today, not a single episode of afib since then. According to my Chads score, I am a zero.

I was drinking rather heavily when I had afib but have since cut down to almost nothing, perhaps an occasional glass of wine every now and then instead of entire bottle.

I don't really want to take xarelto but am equally nervous of stroke. I have a Contec PM-10 and a Kardia. I use them both because whenever I eat, I seem to get minor flutters in my chest and it drives me nuts. (For those wondering, I found the Contec PM-10 more accurate than the event monitor I was wearing but the reports exported from Kardia are better for later use.) Both devices continue to report normal results each and every time I check.

I am a firm believer in being actively involved in my medical decisions and try and much as possible to get schooled regarding drugs and testing procedures. This issue of taking xarelto is the first time I have every run into such a tough choice. I don't think my doctor could care less about this one way or the other but I don't want to toss aside the important drug either.

Is it possible my afib was just a one time deal from drinking too much? I have read that many start off with minor episodes like mine and then change to full blown afib later down the road. Thus far I knew each and every time I was in afib but what about sleeping at night and I don't know? Would it be safer to take xarelto for 6 months or so and then reevaluate? Thanks.

How noticeable was your AFIB during the day? Do you know what your HR was when you went into the ER, before you converted back into NSR? If it was very noticeable during the day, you would probably know about it during the night.
There is a device used by sleep Dr's that you just tape a pulse Oxymeter on your finger at night, and then this data is recorded. That would also give an indication of any Cardiac irregularity during sleep.

Obviously we can't see all of the info that the Doc is taking into consideration, but generally, Xarelto is not needed 5+ weeks out from an short AFIB episode. Since the Dr. doesn't know if you are having unnoticed episodes, he is playing it safe by keeping you Anti-coagulated.

Even if you have a rare brief event during sleep, that you didn't notice, that still wouldn't likely warrant the Xarelto. Now if you had a weekly occurence lasting more than several hours, then that would then indicate Blood Thinning. If it was my Mom, I would tell her to just keep the Xarelto handy, if the AFIB comes back, and then take it.

As for the progression, not necessarily for awhile. I had several episodes in 1994, because of an acute situation, then did not have any more AFIB for 12 years.

Thanks. I went to around 120/130 when in Afib and I definitely knew it when it happened. Thanks for the info. I just don't like the way some doctors just throw meds at you without really talking about it however, I have read some here that actually have problems getting some meds from their doctors so I want to be careful.

Pirate - Regarding anticoagulants - it's important to know your clotting risk factors that involve what makes your blood thick and sticky (hyper-viscosity) and therefore more likely to clot more readily when the turbulence created by afib is in action. Often mentioned to emphasize this is the old saying.... "Churn cream, you get butter. Churn blood, you get a clot."

When I began afib in 1995, the only anticoagulant was warfarin and I didn't tolerate that well because of a low platelet count. I decided to know and monitor the viscosity factors and use fibrinolytic enzymes. Along with herbals known to assist with lowering inflammation that contribute to hyperviscosity and also the enzymes nattokinase and serrapeptase, I managed for 8 years to ride out many long events... often 24 - 27 hours without clot formation. (Then, I went for my first ablation.)

There are many post in the archives on nattokinase and also the clot risk factors and tests for markers of inflammation, etc. you should have done if you decide not to use the prescription anti-coag meds because you do need to know if you are at elevated risk. Granted, anyone can be at risk of forming a clot during Afib...but some, more than others, and you don't want to risk ruining your life by avoiding anticoagulants if you need to be using them.

This is a recent post on the topic of Clot Risk that gives numerous previous posts on this very important topic.
Be smart. Understand and get the appropriate tests so you know your risk factors that can complicate afib events.

Clot Risk: [www.afibbers.org]

Jackie

Thanks. I will discuss some of this with my doctor. I am travelling for a while so cannot get any labs done. I was taking 81mg asa daily but am reading now here that it really doesn't help, am I reading this correctly?

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Pirate
Thanks. I will discuss some of this with my doctor. I am travelling for a while so cannot get any labs done. I was taking 81mg asa daily but am reading now here that it really doesn't help, am I reading this correctly?

No, you're not reading it incorrectly, or at least not entirely incorrectly. Aspirin is significantly less effective at preventing clots caused by afib than warfarin and the DOACs (Xarelto, etc).

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Pirate
Is it possible my afib was just a one time deal from drinking too much?

Yes, it's possible. Excessive drinking is known for that (google "holiday heart syndrome"). However, it's also possible it wasn't a one-time event and it will happen again even without the drinking. Time will tell.

Since you have a Contec and Kardia, test yourself regularly, and have seen no evidence of afib since curbing your drinking, I would probably stop the meds if I were you. But that's me, not you, and I tend to be a terrible patient. ;-) A much safer approach would be to ask your doctor for a monitor (Zio patch, event monitor, or similar) to make sure you're not having episodes you don't recognize.

Excellent advice Carey and welcome to the forum!

Carey is an old timer too who has been around the block a few times as well.

Just finished up day two of Mellanie's excellent Stop-AFIB.org patient conference here in Dallas. Meeting a lot of Afibbers here in Dallas too who will also be joining our forum as well.

Cheers!
Shannon

My nearly 13 year experience using flecainide as pill-in-pocket or on-demand has been 100%. I keep my afib mostly in remission with magnesium to bowel tolerance - after a 2.5 month episode in my first 4 months of afib 13 years ago, I've had 3 episodes totaling 2.5 hours out of rhythm in the last 4 years.

The first time I used flec was to convert the 2.5 month episode. That took 20 hours, as did the next episode a month later. Since then, flec conversion has averaged about an hour, but as long as 3.5 hours and as short as 10 minutes. On the 10 minute one, I also threw in 3-400 mg of powdered mag citrate. The moment I'm aware of afib, I chew my 300mg of flec (200 mg is for those under 154 pounds). It tastes awful, but I'm wanting it in my system as fast as possible. There is a protocol to take a beta blocker first and wait 1/2 hour, which reduces the risk of flec going to atrial flutter.

Excess calcium was also a bad actor and avoid it, getting about 600 mg/day from food.

George

I'm new to posting on this site although I've read many threads over the years and purchased "Thrombosis and Stroke Prevention - 2nd Edition". The only drug I take is a blood thinner (Xarelto). I would like to stop that as every time I swallow one of those pills I feel like I'm trying to kill myself. I had two afib events 3 years ago, 2.5 months apart, and none since. Both times there was really good reason to believe that I was low on electrolytes, and one event was preceded by taking a Benadryl and the other an Allegra. Since then I've stayed away from these types of medications and have monitored my magnesium and potassium intake. I'm on my 4th cardiologist. All they want to do is prescribe medication, not discuss prevention. I quit sotalol and the doctor who prescribed. I also quit taking metropolol and flecainide and the doctor who prescribed. I finally found a doctor who would let me wear an event monitor for a month. No afib, but lots of SVT. He says he'll let me quit taking Xarelto if I let him perform an ablation for the SVT. I truly do not believe him, but don't know what else to do.

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Elanor
I'm on my 4th cardiologist. All they want to do is prescribe medication, not discuss prevention. I quit sotalol and the doctor who prescribed. I also quit taking metropolol and flecainide and the doctor who prescribed. I finally found a doctor who would let me wear an event monitor for a month. No afib, but lots of SVT. He says he'll let me quit taking Xarelto if I let him perform an ablation for the SVT. I truly do not believe him, but don't know what else to do.

I'm afraid you're looking for something that probably doesn't exist. Nobody wants to talk prevention with you because there are no known reliable means of preventing atrial tachycardias such as SVT. Sorry, but there just aren't. You can lose weight, quit smoking, take supplements out the wazoo, exercise regularly and lead a downright pristine lifestyle and it will make little if any difference. Anyone who claims otherwise is either lying or kidding themselves. Demand evidence from them and what you'll get is a) nothing or b) anecdote. That's because there is no evidence.

Now I'll agree with you that many cardiologists are too quick on the draw with the beta blockers and antiarrhythmic drugs, but the anticoagulant is a different matter. They're trying to save your life, Elanor, and that drug will do it. You can quit anything you want, but please don't quit that one. Ever seen the results of a major stroke? Yeah, you don't want to go there, and that's what Xarelto is preventing. The ablation is up to you, but you seem to think he has ulterior motives for offering it. I'm sure he has plenty of patients and doesn't need you, so take it for what it's worth. He's making you an honest, legitimate offer. I would consider it, and if not with him, then with another competent EP. SVT ablations are much simpler than afib ablations. Count yourself lucky.

Elanor - I can appreciate your frustration. My experience with cardiologists (three of them) was definitely not satisfactory until I found one who was connected with Electrophysiology. I learned that cardiologists who have advanced training/education (Electrophysiologists or EPs) are in the best to consult. If you can search your area for that specialty designation, hopefully, you'll have a chance of proper diagnoses. If you give your location, I'm sure Shannon can recommend a highly qualified EP in your area and get you headed in the proper direction.

Along with the EP, you can also find a doctor who has advanced training in functional medicine which deals with the underlying causes of the 'ailment' at hand... such as in arrhythmia, there are specific nutrient tests that help determine underlying stimulators of Afib as well as deficiencies in core nutrients. These are important because they are ever-present and your overall health is affected in other ways until the deficiencies or imbalances are normalized... regardless of whether you have an ablation or not. So, just keep in mind that it takes a more 'wholistic' approach to regain and optimize your health.

Jackie

Thanks for the input. My confusion stems from the fact that ablation for SVT is not performed at the same location in the heart as for afib. So I don't understand how ablation for SVT could relieve me from taking an anticoagulant prescribed for afib. Unless, of course, ablation for SVT is known to relieve afib. But that doesn't correlate with anything I've read. I guess that discussion would be for another thread. Does anyone know of someone who has had ablation for SVT in order to cure their afib?

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Elanor
Thanks for the input. My confusion stems from the fact that ablation for SVT is not performed at the same location in the heart as for afib. So I don't understand how ablation for SVT could relieve me from taking an anticoagulant prescribed for afib. Unless, of course, ablation for SVT is known to relieve afib. But that doesn't correlate with anything I've read. I guess that discussion would be for another thread. Does anyone know of someone who has had ablation for SVT in order to cure their afib?

You said an event monitor you wore for a month showed no afib but lots of SVT. Why do you think you have afib if a monitor didn't catch a single instance in a month?

Three years ago I was hospitalized with irregular heartbeat and lightheadedness twice within a 2-1/2 month period and all the tests run at that time indicated afib. After the second event I decided to do some research and found that my diet and use of antihistamines could very well have caused this. I corrected the situation and no more "obvious" afib attacks. I was told by the doctor prescribing Xarelto and other meds that I was probably having afib events all the time unnoticed by me. Three years later I finally convinced an EP to let me wear an event monitor.

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Elanor
I was told by the doctor prescribing Xarelto and other meds that I was probably having afib events all the time unnoticed by me. Three years later I finally convinced an EP to let me wear an event monitor.

That was a good move because you found that the prescribing doctor was wrong.

It's possible you have paroxysmal afib and your episodes are more than a month apart, but I would expect you would be aware of them. I was like that for almost eight years. I'd have one or two episodes per year that lasted about six hours. It's also possible the antihistamines were responsible (diet is unlikely unless it was a really sketchy diet). So maybe there's some afib there, but the results from that monitor say you simply don't have afib.

I'd say you need a good EP to sort this out and establish exactly what you do have and to what degree. It's not even clear to me at this point that you need to be on Xarelto.

Pirate, from what I see online, there are other anticoagulants that would be a better choice simply because there is no antidote for Xarelto like there is for others. If you start bleeding, there is little or nothing that can be done. Personally, I'd avoid the stuff like the plague. I was helping an older lady that died of internal bleeding on that stuff, thus my interest. Is your doctor getting a kickback for prescribing that stuff??

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jmwe29
Pirate, from what I see online, there are other anticoagulants that would be a better choice simply because there is no antidote for Xarelto like there is for others. If you start bleeding, there is little or nothing that can be done. Personally, I'd avoid the stuff like the plague. I was helping an older lady that died of internal bleeding on that stuff, thus my interest. Is your doctor getting a kickback for prescribing that stuff??

The only anticoagulants with antidotes are warfarin and Pradaxa. Nevertheless, the overall safety of all the DOACs (the newer anticoagulants like Xarelto, Eliquis, Pradaxa, etc) is comparable. Some of them are better than others in certain circumstances, but none of them stand out as significantly safer than the others, antidotes or not.

I take Eliquis, by the way. No antidote in the US. I also ride a bicycle upwards of about 100 miles per week, so I'm at more risk of injury than most. It doesn't worry me. Much. ;-)

The suggestion that the doctor is taking kickbacks? Really, they have better things to do with their time and medical licenses. Xarelto is a very commonly prescribed medication. No drug company or drug salesman is going to pay anybody bribes to prescribe it.

Carey - Just a tidbit on the incentives angle of prescribing meds.

One of my patients, years ago, was a pharmaceutical rep for a large concern. He shared with me the various ways physicians could choose to receive rewards for writing prescriptions. One reward was lavish, all-expenses-paid vacations, cruises etc as part of 'medical meetings' for doctor and spouse.

I just did an online search and noted a number of reports on this topic so apparently it's still a practice. Of course, the physician doesn't have to buy into that reward system, but it does exist.

Jackie

Carey, I surely didn't intend to aggravate you. Just saying, if an anticoagulant has no antidote, personally I'd think twice about using it.

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Jackie
I just did an online search and noted a number of reports on this topic so apparently it's still a practice. Of course, the physician doesn't have to buy into that reward system, but it does exist.

I know it exists but among the physicians I know personally, they don't think those things are worth their time or compromise of their medical ethics to even bother with them. Might a few doctors be persuaded to prescribe Xarelto instead of Pradaxa because of some incentives program? Sure, maybe some would, but the patient gets an appropriate med either way. Now, the real question is would those same docs be willing to prescribe Xarelto when it wasn't indicated? I very much doubt they would. That's delving into the world of malpractice for a lousy vacation or cruise, and most docs can make a lot more doing legitimate contract work than they'll ever get out of some drug sales rep.

I just don't think this is a significant factor at the physician level and I hate to see patients thinking that doctors routinely prescribe inappropriate meds because some sale rep bribed them. The person who seems to think that's the case also thinks ACs without a reversal agent are horribly dangerous. I don't like to let misconceptions stand unchallenged.

Carey - just responding to your comment indicating drug companies wouldn't do that.
No drug company or drug salesman is going to pay anybody bribes to prescribe it.

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jmwe29
Carey, I surely didn't intend to aggravate you. Just saying, if an anticoagulant has no antidote, personally I'd think twice about using it.

You didn't aggravate me. I get your concern about the lack of reversal agents, but in practice those aren't as life-saving as people tend to think. Major bleeding other than in the brain can usually be controlled surgically, and major brain bleeds are likely to be fatal even with a reversal agent. In most circumstances, the drugs will either wear off quickly enough to make a reversal agent unnecessary or the reversal agent won't be fast enough and effective enough to save you.

jmwe29 - You are certainly correct about the concerns over major bleeding with any anticoagulant but esp. these newer ones w/o reversal agents. When I started Eliquis, I had did some mental conferencing over the fact that if I'm severely injured in an auto accident, I'm probably going to die from bleeding. I thought about getting a medical bracelet. But then, I also had experience using warfarin and had other problems that didn't involve an accident. My first ablation was with warfarin. The femoral punctures on each leg and the pressure applied on removal, produced trauma to the extent that I left the hospital with hematomas on both legs from the groin to my knees. Hugs sacks of blood. Slightly uncomfortable and definitely weird feeling when I walked. However, my heart was in NSR so that was a small sacrifice. It took well over a month for those blood sacs to resorb back into my system. The discoloration seemed to last forever.

Then, when I had the second ablation 11 years later and the anticoag was Eliquis, I had a lot of concerns but certainly didn't want to do a repeat with warfarin. Happily, the bruising effects with Eliquis were virtually nothing and the same with #3 the following year.

There is concern with accidents or falls and also internal bleeding such as something in the stomach or intestine which is obviously unforeseen and as you might imagine after the warfarin saga, I did a lot of research on the NOACs. But I'm 81 and active so have my share of bumps and such but I'm not losing sleep over the 'what if's.'

I also don't feel that reputable physicians prescribe NOACs when patients aren't at risk.

Jackie

I certainly can't begin to understand what most of you are going through with heart troubles or whatever that requires you to take medications. No, I don't have any problems like that, just second-hand knowledge of an older lady with afib that passed away with a mouthful of blood from taking Xarelto. Clearly a stomach bleed. I have no intention of trying to undercut your doctor's advice. But...

Some of you have questioned whether or not doctors take money from pharmaceutical companies. It's easy enough to find out at Dollars for Docs, That's all you need to find the site and check out your doctor. Drug and device companies are required by law to disclose payments. And in the updated website, they have this quote: "The 10 drugs for which companies spent the most in payments to physicians in 2015 (teaching hospital payments not included) were blood thinner Xarelto ($28.4 million)..." Guess what's #1. I certainly hope your doctors are above all this, but it's common practice that you can check for yourself. I wish you all the best.

jmwe29 - I’m glad you posted your concerns because ‘awareness alerts’ are always important. For seniors, especially, it's always important to question exactly why they need the blood thinner as 'old tissue' is much more friable than that of a 50 y/o and eventually, at some point, the question becomes if it's worth the risk.

Thanks for the Dollars for Docs link. I did some just by state and the results are more than interesting.

Be well,
Jackie