New member - questions re Eliquis

Hi,

I'm new to this group although I have read articles. I have Lone Afib and was not on meds except for baby aspirin and pip metoprolol when needed. But lately I have had more episodes than usual and had to have a cardio version. All other tests were good. Now I'm on propfenone, and metoprolol. I also have to take Eliquis for a month after the conversion. I don't want to take the Eliquis and was thinking of taking Nattokinase. I can across this article and was wondering what anyone thought of it:

"Fibrinolytic agents are extremely dangerous. In years past, we used to treat heart attacks with intravenous fibrinolytic agents like tissue plasminogen activator, urokinase, streptokinase, and others. They have fallen by the wayside, for the most part, because of limited effectiveness and the unavoidable dangers of their use. Fibrinolytics are "dumb": they dissolve blood clots in both good places and bad. While they might dissolve the blood clot causing your heart attack, they also degrade the tiny clot in your cerebral (brain) circulation that was protective. That's why fatal brain hemorrhages, bleeding stomach ulcers, and blood oozing from strange places can also occur with fibrinolytic administration. Believe me, I've seen it happen, and I've watched people die from them."

So now I'm not sure what to do. My doc said to take 325 mg of aspirin after getting off Eliquis. When I was in the hospital for the conversion I mentioned Magnesium everyone (and the doc) said "she's been on the internet again". They did mention Potassium. Ha Ha My mag rbc is 6.1 so I think that's good. I'd love to get off all meds but this last episode really made me feel like crap. I asked my doc about the recommended tests for inflamation (Fibrinogen, CRP, Interleukin, etc) and he said it wouldn't change his treatment and if they were high they would increase my meds. But I said that's not finding out the cause of the inflammation.

Thanks for any comments.

Hello Redhead…. Good questions and observations.

Above all else, no one needs to be at risk for forming adverse clots and many factors in addition to having Afib should be considered. However, Afib definitely presents a threat.

From a medico/legal liability aspect, medical practitioners are obligated to caution the patient and prescribe what is considered standard-of-care protocols. You’ll find that varies somewhat but the bottom line is, from the m/l liability aspect, they are covered if you’ve been formally advised and prescribed according to the Standard of Care. Does this mean you are absolutely, totally guaranteed not to have a clotting event? No. But using Rx anticoag meds does offer high degree of protection.

Therefore, any advice here or elsewhere should also include the disclaimer that certain health conditions tend to promote clot-risk tendencies so it’s critically important to know and understand that opting not to take Eliquis or similar puts you at considerable risk. Factors include age, overall health, CHADs Vasc Risk score, and conditions that tend to produce systemic or silent inflammation that contribute to blood hyperviscosity…just to name a few. Check your CHADs risk score here… [www.mdcalc.com]

Lab testing is available for clotting risk markers including inflammation (HS-C-reactive protein or CRP) elevated homocysteine, fibrinogen, ferritin, Lipoprotein(a) elevated glucose levels, and more. Critical to control inflammation. There are archived posts on clot risk that go into detail… link followsbelow.

You want to be safe because strokes can derail your life.

I’ll share a bit of my history. My first AF event began at age 59 which led to several cardiologists recommending various meds, mostly beta blockers, and eventually warfarin/Coumadin. I have a low platelet count and warfarin was a nightmare for me. Aspirin is contraindicated. The good news about the new anticoags such as Eliquis and Xalerto is that they don’t require regular monitoring or testing of INR as with warfarin. I had trouble stabilizing warfarin and after one INR test, was called by the hospital lab to say I was out of range and at 10:30 at night we had to find an all-night pharmacy to pick up a prescription for Vitamin K as a reversal agent and for me to just sit in a chair and wait… no stairs or risks of falling.

I learned quickly, at least back then, the local cardiologists weren’t well-versed in the fine points for treating AF…and switched to one who was in a practice with Electrophysiologists so he had exposure to the latest treatment info. I was prescribed metoprolol, flecainide and warfarin. As is often the case in early onset AF, my events were not frequent and eventually, rather than use the meds daily, it was recommended just to use at the onset. First, the betablocker to slow the heart rate, then about 30 minutes later – add in the Antiarrhythmic, flecainide. If not converted in hour, take another dose of the flecainide. I have low platelets and didn’t get along at all with the warfarin… so told the cardiologist I was going to stop and would sign a release so it was in my records. He said no need for that but if I had a prolonged event, I should consider going back on it.

So, in addition to high dose Omega 3 fish oils plus ginkgo, ginger, curcumin, bromelain and serrapeptase and pycnogenol. I learned about the fibrinolytic enzyme Nattokinase from Ralph Holsworth, DO, and the expert in the US on using NK to help prevent clots. I used that successfully as my AF progressed to much more frequent in occurrence and of long duration. There are archived posts here on nattokinase and also pycnogenol (aka) Maritime Pine Bark Extract – used in the Flite Tabs study that determined pycnogenol was effective in preventing deep vein thrombosis during long-haul flights.

My first ablation was by Dr. Natale in 2003 and at that time, the only anticoag was warfarin, so I was back on that for the requisite time…. and as soon as I was cleared to stop the warfarin – 90 days post-ablation, I resumed the full regimen of Nattokinase, etc. This has been posted in detail in the archived posts, but briefly… then at 103 days post ablation, I went into AF and was cardioverted. The following week, I had a CT scan of the heart which was required back then. I asked for a copy of the scan report for my records and about 6 weeks later when I received it, saw a notation that a clot was noted in the LAA… But I wasn’t told about it. I called the EP nurse and commented that it was a good thing I resumed the NK doses and was alive to tell my story of NK’s efficacy!!!

The lesson here is that when you are in Afib, the blood does not clear out heart easily and often not quickly out of the chambers. If it’s also thick and sticky, there will be a higher clotting tendency. The saying to emphasize the risk of hyperviscosity during AF… goes: “Churn cream, you get butter. Churn blood, you get a clot.” Might not be a problem with short bouts of AF but prolonged duration is high risk.... worse, if your blood is thick and sticky.

At the time of my CT scan and the clot detection, Hans Larsen who moderated the forum back then said it was likely that the cardioversion caused the clot. We’ll never know for sure, but one thing is certain, after going off warfarin and back on all of my supplements to help keep my blood thin and slippery, including Nattokinase, I survived a clot in the LAA in 2004 and I’m still ‘ticking.’ I’m also using the half dose Eliquis required after the last ablation. And yes, I notice it has many undesirable side effects. Just trying to cope and count my blessings that my heart has been calm since April 3, 2015, thanks to Dr. Natale and staff in Austin, TX.

This post Clot Risk gives links to archived reports on this topic.
[www.afibbers.org]

Jackie

Thanks Jackie. My doctor said my CHADs score is 2 (I'm 72) but when I went to that calc it was 1. All the answers were "no" except for age. I have no other heart problems. Do you think the Natto and serrapeptase would be sufficient to use? The Eliquis is expensive and I can't afford it. I'm thinking if the meds keep me in normal rhythm then I would be ok.

Well, it's pretty scary to think that the conversion caused the clot. I'm reading thru the "clot risk" now. My doctor didn't really think those inflammation test would change anything except to say that he would increase my meds if they were high!. I think I will send him a note and ask if he will give me a script as they would be covered under my insurance.

Elaine



Edited 1 time(s). Last edit at 10/29/2017 04:51PM by redhead19047.

Hi Elaine,

Was nice speaking with you earlier.

Regarding the quote by the unnamed and misinformed person trying to equate IV clot busters like TPA (tissue plasminogen activator) and much earlier options such as urokinase ... and compared with oral proteolytic and fibrinolytic enzymes such as Serrapeptase and Nattokinase .. he or she is WAY off the mark!! Oral proteolytic enzymes are not even close to as risky as are IV clot busters ... and by the way ... TPA is still the defacto clot buster of choice when it is determined by the lead ER physician to use a clot buster to try to reverse a stroke or at least preserve some degree of function depending on the deficit experienced by the patient and depending on how 'old' the stroke is.

The decision to use an IV clot buster most of which have some fibrinolytic action as well as other biochemical properties, is most definitely a careful decision to be made that take into consideration a number of factors. However,t when the possible gain is deemed to be greater than the risks, which are not minor, then TPA is almost always the current choice in ERs all over the US and much of the world. It is not obsolete by any means as the author of that paragraph suggested.

In any event, oral anti-inflammatory enzymes that have fibrinolytic properties as well as other qualities, are largely recognized as very safe and very low side effect over the counter agents that are used by huge numbers of people world wide every day in far larger doses than typical Nattokinase doses of 100mg to 300mg a days a typical maximum dose of Nattokinase..

Trying to label Nattokinase in the same ball park as an IV clot buster shows zero awareness of the vast differences between these two class' of agents that simply both share some anti-fibrin effects in addition to a number of other unique qualities that make them very different from one class to the other, not only in therapeutic effect but certainly in the vastly lower risk for the oral proteolytic/flbrinolytic enzymes used primarily for their anti-inflammatory and anti-fibrin clean up effects, and which have a very long history of safety when taken as indicated.

The FDA is certainly NOT going to approve over the counter sales of IV clot busters, and if the oral anti-inflammatory enzymes where anything close to as dangerous and risky as an IV clot buster they certainly would not be approved for over the counter use as is Serrapeptase and Nattokinase in many parts of the world including the US!! The FDA does not regulate Nattokinase, but it certainly would if it posed even a fraction of the risk as an IV clot buster does!

In any event, this paragraph you found mentioned above on some website Elaine reminds us all to be careful, discriminating and skeptical when taking such online quotes at face valu! It is good you came here to ask for clarification about Nattokinase.

And Nattokinase is largely safe when used as indicated, but NOT when combined with a full blood thinner without being under strict supervision of a knowledgable physician who in intimately familiar with OAC/NOAC drugs plus Nattokinase.

However, I do not recommend using Nattokinase either in combination with a true blood thinner, nor as a substitute for a true blood thinner when the person has a stroke risk score high enough that they require on-going true oral anti-coagulation.

Nattoklinase, in my view, is a good adjunct to add to a healthy diet and life style, for those who either have AFIB still, but with a stroke score that does not indicate they should be anti-coagulated with warfarin or a NOAC, or for those like myself who no longer have AFIB, but who required full LAA isolation to end their arrhythmia and are now arrhythmia free AND who have also had a successful LAA closure procedure and simply wish to augment that strong protection with a daily dose of Nattokinase/Cardiokinaase.

Just do not assume Nattokinase is a safe complete substitute for a true blood thinner like warfarin or a NOAC drug for those who truly need to be on a true blood thinner. The evidence we do have to-date simply is not sufficient to recommend using Nattokinase instead of an oral anti-coagulant for those who actually require OAC drugs based on risk scores..

Cheers!

Shannon



Edited 2 time(s). Last edit at 10/30/2017 02:13AM by Shannon.

Shannon:

All well and good but what if a person can't take those blood thinners? A number of years ago I took Coumadin, after a month or so I started getting bloodshot eyes, blood pooling in my thumbs, I was told to stop the drug. A few weeks after the stoppage of Coumadin I got a bloody nose (never had one before) and coughed up some blood clots. I went to ER but had to sit for a number of hours and I didn't have any more symptoms so I went home. I now take aspirin, I know it isn't the best, but, I have no other option.

I can't take Natto because it will give me Aura Migraines, so what is your advice for me as I do get some episodes of AF, they usually stop after 3 to 12 hours. My mother had permanent AF and she did take Coumandin for about 8 years before her death. A year or so before her death she had tarry stools and was found to be bleeding, she had to stop Coumandin. There are no safe ways when we have AF, even people that have had an ablation still have to take a blood thinner.

Liz

Liz,

In your situation, I'd probably continue doing what you are doing. From what you've described, the bleeding risk and other known reactions outweigh the stroke risk for afib. Especially since you have relatively short episodes. As I recall, they have a 48 hour window they will do cardioversion without prior anticoagulation of a TEE. You are well within that window. No guarantees, but that would seem to make the most sense to me.

George

When i asked the cardiologist how quickly a clot can form (when not taking anti-coagulants) in the appendage after going into afib, he said as little as 2 hours. Did he try to scare me or cover his butt?



Edited 1 time(s). Last edit at 10/29/2017 10:56PM by Joe.

George:

Thanks, i don't think there is much else that i can do, it does get a little scary at times, but life has no guarantees.

liz

Joe:

George N. said that he has read there is a 48 hr. window, I have read that as well. If your AF lasts longer than 48 hrs. you need to go to ER. I think your Doctor is trying to scare you.

liz

Hi Elizabeth,

Your case is really the kind in which LAA Closure is primarily aimed at addressing, so long as you choose a highly experienced operator for installing a device like the Watchman at a high volume center. In such cases, and with such experienced physicians, the installation risk is quite low and there is little to no longer term risk once past the peri-procedural minor to modest risk window that is no more really than an index ablation risk and actually a fair degree less in highly experienced hands.

And it is absolutely NOT true that all afibbers who become 'former' afibbers via an expert ablation process all have to stay on blood thinners for life either. I am living proof of that fact as are many thousands of other across the world and with a growing number each day!

In your case, you might choose to manage your AFIB pretty much as you have been doing as George noted, but just focus on eliminating the AFIB/LAA-based stroke risk with LAA closure in light of your inability to tolerate any blood thinners. This scenario can work well too and could certainly reduce any LAA embolic event risk a good deal more than just popping a 365mg Aspirin each day!

I realize the aspirin feels reassuring, but statistically and practically it isn't much of a real world help at all in lowering real world AFIB/LAA-based embolic risk. It is basically just a psychological reassurance more than an actual one.

How many episodes of AFIB do you get now Liz, say each month and each year? And are you sure you feel each and every episode even during sleep? And has it increased in episode frequency or duration of episodes over the last few years at all?

I'm just looking now at your realistic management scenarios going forward. And since you are still paroxysmal AFIB the longest episode around 12 hours or so (if I read you correctly), then getting shocked at the ER is not much of an option really. Few ER docs, if any, are going to agree to an ECV once they learn you almost always still convert to NSR on your own within 3 to 12 hours of the start of any episode.

And FYI, most ERs prefer to conduct an ECV within the first 24 hours of an unbroken AFIB episode rather than wait until the bitter last moment of a 48 hour window .. Though 48 hours is at the very edge of the limit that some docs and centers will use as the actual cut off line for considering an ECV without first undergoing 3 weeks to a month on an oral OAC drug, assuming you were not anti-coagulated when you walked into the ER out of rhythm.

Regarding the procedure recovery for a Watchman device installation at a high volume center and done by an elite LAA Closure expert with a wealth of experience installing these devices, it takes about 30 minutes for the full procedure and it is very low risk under such circumstances and with very low procedure recovery burden as well.

In talking to a good number of folks who have had Watchman installed at St David's, the number one comment I have heard it that they did not notice any pain or issues to speak of, nor feel like anything sigificant had been done to them or their hearts after the procedure and the next day as well as going forward. Typically, little to no pain or significant discomfort of any kind is reported, and essentially all I have followed are up and about some that same installation day in the hospital and the following morning to, and very little worse for the wear!

Anyway, we can talk more about it all via phone too Liz and review this whole scenario in more depth if you are interested. And as George said you can choose to continue as you have and you may well remain fortunate and never have any embolic or bleeding event going forward at all. Though it is likely a larger roll of the dice over time than going for LAA closure in a case like yours.

Be well,
Shannon

Shannon,

Thank you so much for your time and expertise. Since my CHAD score is 2 (afib and age, nothing else) I want to try the Natto and Serrapeptase. I also can't afford Eliquis. So I guess I will have to be diligent about monitoring my pulse, etc. I think I have been in short episodes of afib more than I realized because I was complacent since I did so well in the past. Just thinking now that I could have developed a clot and wondering why I didn't? My doctor said to keep any left over Eliquis and take it if I needed to as it works within 48 hours to thin the blood.

My brother also has Lone Afib and nothing else. He's 74. He only takes a quarter of Propaenone and then Taurine, Arginine and Remag 3 x a day. He said that the Arginine did the trick. He also does HeartMath or something called Inner Balance which has to do with breathing.

Elaine

Shannon:

Thank you for your reply---My episodes depend, the last AF episode I had was after an interval of 2 and 1/2 months, I went all of August, Sept. and part of Oct. then i got a short episode and 2 days later another one that lasted about 12 hours (this was unusual as I don't get episodes that close together) I have been AF free for about 2 and 1/2 weeks. So generally, I get episodes maybe once a month or maybe every 2 months. A lot of times when I convert to NSR my heartrate tends to be low for quite a while, my pacemaker is set at 50 so it can't go lower than that, my heart rate normally is around 65, so the low heart rate makes me feel tried. Years ago when i converted to NSR, i then was fine.

Shannon, I have a pacemaker that records my AF episodes and I do not get them at night while sleeping, if i get an episode during the night it awakens me. i keep track of my episodes and they correspond to what my pacer picks up.

AS to the Watchman device there are conflicting opinions about the safety of the device, even if done by Natalie. It appears that one can get a stroke with the device as well, this Dr. John has a website about this device of which I know you are aware of.

There are a few posters on here that say they are still on blood thinners even after an ablation of one, or three. Jackie has said she is on a blood thinner and she is a very knowledgeable person.

I try to keep my episodes as short as possible, I take a tab. of Propafenone and chew it (aka George N.) and take magnesium, and an aspirin, the chewing of the Propafenone has shorten my episodes, thank you George.

Liz

If the LAA is closed off, that doesn't mean that blood clots can't form in other parts of the body--what happens to the blood that isn't able to form clots in the LAA? I read that people who have had the Watchman installed are to remain on aspirin the rest of their lives.

Liz

George - Yes, there is the 48-hour window 'rule' but based on my experience (here), but that doesn't mean you can show up at hour 47 and expect to have the cardioversion. I found it necessary to make the decision to call in advance for assistance at about hour 24 duration. I would call and they would give me an approximate arrival time. There would be a certain amount of prep time and then I'd be in a 'holding' pattern waiting for a slot to open in the procedure area. I never had to call and cancel because I self-converted in the interim. I pretty much knew if I reached 24 hours, I was going to need ECV... although I did wait longer on a few occasions and did convert around 27 hours.

For me, there was nothing local, so I had to calculate in at least an hour's drive and then the check in process which could be another 30 minutes or more so if my Afib or flutter went on and on, then, about hour 20 I'd start fasting and gather what I'd need for the trip and place the call to the nurse's line or the night shift message system if that were the case. They'd call early in the morning and I'd be ready to leave at that time.

Other locations may have 'walk-in service' where you can be processed quickly, but not here..... making it important for afibbers to check out their local facility protocols ahead of time in order to observe the 48-hour rule and be seen within that window.

Jackie

Good advise, thank you! The cardiologist should have told me that



Edited 1 time(s). Last edit at 10/31/2017 07:05PM by Joe.

Quote
Jackie
George - Yes, there is the 48-hour window 'rule' but based on my experience (here), but that doesn't mean you can show up at hour 47 and expect to have the cardioversion. I found it necessary to make the decision to call in advance for assistance at about hour 24 duration. I would call and they would give me an approximate arrival time. There would be a certain amount of prep time and then I'd be in a 'holding' pattern waiting for a slot to open in the procedure area. I never had to call and cancel because I self-converted in the interim. I pretty much knew if I reached 24 hours, I was going to need ECV... although I did wait longer on a few occasions and did convert around 27 hours.

For me, there was nothing local, so I had to calculate in at least an hour's drive and then the check in process which could be another 30 minutes or more so if my Afib or flutter went on and on, then, about hour 20 I'd start fasting and gather what I'd need for the trip and place the call to the nurse's line or the night shift message system if that were the case. They'd call early in the morning and I'd be ready to leave at that time.

Other locations may have 'walk-in service' where you can be processed quickly, but not here..... making it important for afibbers to check out their local facility protocols ahead of time in order to observe the 48-hour rule and be seen within that window.

Jackie

Hey Jackie,

Point of my post on 48 hours wan't that Liz would do this, but as a measure of clot risk. Since Liz seems to convert in 12 hours which is much less than the max ECV times without anticoagulation, it indicates a relatively low clot risk. LIz is of course correct, even with a closed LAA, doesn't mean you can't get a clot elsewhere. In my case, I try to work to reduce all my metabolic factors that can lead to an environment favorable to clots. I know you do too.

George

I lived by the so-called 48-hour rule for a couple of years but I no longer believe it has much validity.

Afib is a chronic disease and too many strokes happen to people with afib who haven't been in afib recently to rely on any sort of time criteria. Go by your CHA2DS2-Vasc score instead. If your afib still occurs paroxysmally, you probably need to remain on ACs regardless of your score.

Hi George - yes. I understand. I was just commenting for benefit of new readers that it may not be easy or quick to go for the ECV without advance planning. I totally agree with you that working to be sure all metabolic factors are in safe ranges and don't promote clotting tendencies is by far the most healthy approach overall. Thanks,
Jackie