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Now I am really afraid to stay on Eliquis....today was an eye opener

Posted by tobherd 
Now I am really afraid to stay on Eliquis....today was an eye opener
February 04, 2019 11:47PM
I don't think this impacts what happened, but my 83 year brother in law, Craig, has a form of Parkinson's disease, where he moves VERY slowly and has shaky hands, etc. Yesterday afternoon, he must've tripped on his own feet and fell down hard on his side, in his kitchen. Tonight, he is in ICU on a ventilator, has had his kidney and spleen removed, and has still not woken from the two operations they did to try to get his blood to clot and contain it. He had something like 14 units of blood through transfusion and it's questionable as to how this is all going to turn out.

He is on Eliquis - and apparently, that's been much of the problem. He had to be moved to a trauma center as he was going into shock when the ambulance got to their house, and he had internal bleeding. From what I've heard, they see a number of cases of people on Eliquis who they have trouble handling after a fall or accident, as there still is no real antidote to this drug. I thought there was!

While I seem to tolerate Eliquis w/o a problem, this experience with my brother in law and the other examples I heard about in the hospital make me very uncomfortable staying on this medication....

I know there is the Watchman and the Lariat as options, but how safe and effective are they really? And how close are we to an antidote (is that the right word?), for Eliquis, to stop the bleeding that can occur after an accident, fall, etc.?

Scary stuff.....Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 07:42AM
How about good ‘ol Warfarin - an anti coag that’s been around for umpteen years.

This garbage that pharma hypes about not being able to eat certain foods while on Warfarin is just that - garbage. They don’t like us to pay next to nothing for an effective, long track record drug. My husband and I are both on Warfarin; no side effects, know there is an antidote for situations such as your brother-in-law’s and easy on our pocket books. We are consistent in what we eat. I am plant-based and devour a big bowl of salad every night and my dose is adjusted accordingly.

We have our INR checked every 5-6 weeks, staying in the 2.4 to 2.6 range.

Parkinson’s is one nasty disease, and I won’t inquire why they removed major organs simply from a fall. My maternal granmother had it, and my cousin died of it two years ago. Good luck to you and yours.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 10:29AM
First, there IS a reversal agent for Eliquis. I don't know why Barb's brother in-law didn't receive it, but by the sound of it the injuries were serious enough that they would be life threatening even without an anticoagulant being involved.

Second, Eliquis is safer than warfarin. There is no "big pharma" conspiracy here.

I'll write a more complete response later when I have time, but in the meantime, there's nothing scary about Eliquis.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 12:04PM
Do you know the name of the reversal agent, Carey? I believe they used one, but said it wasn't all that effective.

I'm back to the hospital now to see what his status is. I do think this whole thing warrants more discussion - at least for me it does. I have NO interest in warfarin, but I do have an interest in getting off blood thinners all together, since I no longer have Afib and my TEE's were good...

To be continued....Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 12:53PM
Hasn't Eliquis such a short half life that missing a dose may mean it's no more effective?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 02:58PM
Quote
tobherd
Do you know the name of the reversal agent, Carey? I believe they used one, but said it wasn't all that effective.

I'm back to the hospital now to see what his status is. I do think this whole thing warrants more discussion - at least for me it does. I have NO interest in warfarin, but I do have an interest in getting off blood thinners all together, since I no longer have Afib and my TEE's were good...

It's called Andexxa (generic name: andexanet alfa). It reverses both Eliquis and Xarelto. There's a separate reversal agent for Pradaxa.

Since they had to remove his spleen and kidney, that was obviously a very bad fall. People underestimate falls, but I spent 15 years as an EMT and falls in and around the home were some of the most common calls we dealt with. I've seen broken arms, legs, hips, and ribs, fractured skulls, internal injuries like your brother in-law suffered, a nose literally ripped off, and even deaths. Both the kidneys and the spleen are very vascular organs. You rupture a spleen or kidney and you're going to bleed a LOT, so for him to need transfusions isn't surprising given that he must have ruptured both.That would have been true even without the Eliquis.

The thing is, warfarin has a much longer half life than Eliquis (20-60 hours vs 12 hours), and vitamin K takes upwards of 12 hours to reverse it, so it's not in the least bit safer than Eliquis. But the reality is that people dying from bleeding due to anticoagulants is really a pretty rare thing. A lot of people tend to overestimate the danger. External bleeding can almost always be controlled with direct pressure, and internal bleeding can almost always be controlled with surgery if you can get to (an appropriate) hospital in time. The bigger danger is bleeding within the brain. It doesn't take a lot, and surgery can't always stop it.

As for stopping anticoagulants, what's your CHADS-Vasc score? That's the thing that's going to determine how practical it is for you to stop anticoagulants. If you're not sure, there's a calculator here. And yeah, there are LAA occlusion devices like the Watchman (I have one), but Medicare and insurance companies so far aren't paying for those unless you can't tolerate anticoagulants. I think that will change in the next few years as they come to realize that an occlusion device is a hell of a lot cheaper than a stroke,



Edited 1 time(s). Last edit at 02/05/2019 04:51PM by Carey.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 06:17PM
As for stopping anticoagulants, what's your CHADS-Vasc score?

Isn't the "female" point gone now?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 06:44PM
Quote
katesshadow
Isn't the "female" point gone now?

Yes, it is.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 07:25PM
According to my brother in law's doctor, it takes 48 hours to clear the body....I"m not sure that they had an effective reversal agent, and am not even sure what the status of that is....

Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 07:29PM
Do you even have a CHAD score if you no longer have Afib? I am a 66 year old female who has not had Afib for over 4.5 years, since my 'touch up" ablation with Dr. Natale. I did have a LAA ablation initially, but have been fine since the touch up.

What else matters in terms of calculating your (my) risk?

Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 09:37PM
Everyone has a CHADS score even if they no longer have afib. You can ignore the point you get for being female, but you get at least one for being over 65. If that's the only point you get besides being female you could probably stop anticoagulants.

HOWEVER....

What really concerns me is your mention of an LAA ablation. If your LAA was isolated during your ablation, did they do a TEE afterwards to measure your LAA flow velocity? And were you told that your flow velocity was sufficient that you could stop taking anticoagulants? If you don't know the answer to those questions or the answer is no to either one, you absolutely cannot stop anticoagulants. The only way you can stop anticoagulants if you have an isolated LAA and inadequate flow velocity is to have your LAA occluded with a device such as a Watchman. Please don't even consider trying to do so until you're sure what your status is.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 05, 2019 10:37PM
Carey - I've had 4 TEE's since my LAA isolation. (one after my first ablation, on after my "touch up" ablation, then another one as I seemed to be pretty close to the "line", I believe....My most recent one was done last August, and it showed the peak emptying LA appendage velocity was 41.4 cm/sec. Normal left atrial size. Peak filling LA appendage velocity is 67.4 cm/sec.

TEE was performed at Montefiore hospital and read by the doctor that was requested by Dr. Andrea Natale, as he felt that doctor read the test most accurately.

It seems they felt the numbers were good, but were still hesitant..and Dr. DiBiase (at Montefiore), suggested I have it done one more time.

Not sure what to do at this point.....Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 01:01AM
Quote
tobherd
Not sure what to do at this point.....Barb

Easy. Do what Di Biase recommends. I would trust him if I were you.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 02:10AM
Hi Barb,

Ditto what Carey said ... get that last TEE at Montefiore with your results to-date being still close to the line of being okay regarding your LAA mechanical function after your initial and touch-up LAA isolation procedures.

Then, we can help you make the decision for a Watchman, if that seems the best long term move for maximum safety and freedom from having to remember anything critical at all ... like don't dare miss a dose of Eliquis after LAA-isolation, if your LAA mechanical function is still only borderline robust enough, at best.

Cheers!
Shannon



Edited 1 time(s). Last edit at 02/06/2019 02:14AM by Shannon.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 08:18AM
Shouldn't anyone who has Afib have an automatic "1" on the CHADS score?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 08:55AM
Quote
katesshadow
Shouldn't anyone who has Afib have an automatic "1" on the CHADS score?

Nope. See: <[en.wikipedia.org]
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 09:53AM
Quote
katesshadow
Shouldn't anyone who has Afib have an automatic "1" on the CHADS score?

Yes, if you are female. However the threshold is increased by one point for females uniformly in the revised 2019 standard, so there is no penalty for females,



Edited 1 time(s). Last edit at 02/06/2019 10:37AM by safib.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 10:06AM
Now I'm confused. When did "female" get dropped from the factor list?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 10:22AM
Quote
PBqltbook
Now I'm confused. When did "female" get dropped from the factor list?

[www.thecardiologyadvisor.com]
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 10:42AM
My flow velocity was fantastic after my LAA was isolated but I had no A Wave. My Chad score is actually 1 or less. I say this because I do have very minor BP issues. Besides that, Going by the Chads scoring system I shouldn’t have to take a anticoagulant. A Waves is not part of the Chad scoring criteria unless I am not understanding.

Anyway, My point is your velocity can be excellent after LAA isolation but a missing A wave blows up my tee results. So, I take Eliquis for life and I despise it because of cost and the pharmaceutical industry screwing the common man.
Why is Eliquis $415 a month in the USA but approx. $130 in Canada AND why is 2.5 mg of Eliquis the same price as a 5 mg pill? Pisses me off big time.
I am a common man and do not understand A waves etc.
I am a darn good retired EE but not versed in field of Cardiology.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 11:24AM
Quote
smackman
Why is Eliquis $415 a month in the USA but approx. $130 in Canada

Ask Congress why they prohibited Medicare from negotiating drug prices and you'll have the answer.

Meanwhile, you can get Eliquis for $165 per month from planetdrugsdirect.com. Completely legit and reputable. I've used them for a couple of years.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 11:58AM
Quote
Carey

Why is Eliquis $415 a month in the USA but approx. $130 in Canada

Ask Congress why they prohibited Medicare from negotiating drug prices and you'll have the answer.

Meanwhile, you can get Eliquis for $165 per month from planetdrugsdirect.com. Completely legit and reputable. I've used them for a couple of years.

Can anyone order from there?

Also, call me dense, but if Afib causes your blood flow to slow or stagnate, why is it not considered in the CHADS score?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 12:14PM
Quote
Carey

Why is Eliquis $415 a month in the USA but approx. $130 in Canada

Ask Congress why they prohibited Medicare from negotiating drug prices and you'll have the answer.

Meanwhile, you can get Eliquis for $165 per month from planetdrugsdirect.com. Completely legit and reputable. I've used them for a couple of years.
I know you are joking when you say ask Congress. Maybe I will ask them to explain their luxurious life style on there salary and living in one of the most expensive cities in the US plus living in Mansions with walls and armed personnel by their side.

It’s called kickbacks. I am almost 61 and because I am disabled, my Medicare Supplement is over 2x higher than a 65 year old. I am not disabled from having AFIB; I had a bad car accident in 2003. Anyway, Congress really reeks with ......., Get the picture.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 12:25PM
Quote
katesshadow


Also, call me dense, but if Afib causes your blood flow to slow or stagnate, why is it not considered in the CHADS score?

The thresholds are based on nonvalvular AF population. So the test is based on AF. There is interest in using the score for other populations
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 01:40PM
So just being in afib itself is not a risk factor?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 02:32PM
How is the Chads score figured with someone like me? I have minimal high blood pressure issues(like 125/78 taking 25 mg of ER Metoprolol 1 time a day).
No AFIB issues since last Ablation in June 2016
61 years old
1 stent put in Jan 2012.
Great flow velocity after LAA was isolated according to TEE in December 2016 BUT NO A WAVE DETECTED.

Can a Chad’s score be accurately figured on Cases like mine?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 04:17PM
Quote
smackman
How is the Chads score figured with someone like me? I have minimal high blood pressure issues(like 125/78 taking 25 mg of ER Metoprolol 1 time a day).
No AFIB issues since last Ablation in June 2016
61 years old
1 stent put in Jan 2012.
Great flow velocity after LAA was isolated according to TEE in December 2016 BUT NO A WAVE DETECTED.

Can a Chad’s score be accurately figured on Cases like mine?

Sure. The stent means you've got vascular disease so that's 1 point. If your pressure would be over 130/80 without the metoprolol that would be another point.

So you're either a 1 or a 2 depending on BP without the metoprolol. When you hit 65, you'll get another point.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 04:22PM
Quote
katesshadow
So just being in afib itself is not a risk factor?

Yes, it's a risk factor but it's not considered in the scoring system. CHADS assumes you have (or had) afib.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 08:20PM
Since we're discussing many topics within this thread, I'm gonna be bold and ask a short question related to NOACs.

(Hope no one believes I'm trying to railroad the original poster's subject.)

Anyone have the latest on Lupin’s generic Eliquis?

Thank you.

/L
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 09:24PM
Not me, but thanks for alerting us to the fact that a generic apixaban has been approved by the FDA. Somehow I missed that news.

My insurance covers Eliquis at no charge because it's a preventative med, but if I were paying for it I wouldn't hesitate to get the generic.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 10:25PM
Update...I spoke with Salwa in Dr. Natale's office today, about this topic we've been discussing. She said that they no longer use the CHAD score to determine whether or not to stay on or get off of the blood thinner -but now rely on the TEE. She was going to talk with Dr. Natale, who will be coming to the NY area soon, to see if I can either make an appt or talk with him further. I believe she said that the doctor who read my most recent TEE (and who was requested to read it by Dr. Natale), said I could get off of Eliquis. I'm wondering if I understood her correctly....

So I am waiting to hear back from her. In the meantime, I have a question about the CHAD score....do you get a point for high BP if it is well controlled with medication and is not high now? It tends to be around 115 or 120/78 or so...

OK...thanks for all of your replies. I think this is a very important discussion, especially after seeing what happened to my brother in law.

Good night all ~ Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 06, 2019 10:30PM
Hi Shannon - are my numbers borderline? When I spoke with Salwa today, she indicated that the doctor who read my TEE report determined that I could get off of Eliquis...or at least that's what I think she said. And is there an effective reversal agent for Eliquis or not? If so, it sure didn't do a good job for my brother in law...who was brought to the hospital he's in because it's a trauma center and i think because they're supposed to be able to help with something like this.

If there's an effective reversal agent, that at least is somewhat reassuring, but I'm not sure that would be effective if you were to bang your head....brain bleeds don't have a good record for recuperation.

Good to hear from you. I hope you and Magdalena are doing well.

Warmly ~ Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 12:43AM
Quote
tobherd
In the meantime, I have a question about the CHAD score....do you get a point for high BP if it is well controlled with medication and is not high now?

Yes. You get a point for hypertension even if it's well controlled. I get one for that.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 09:34AM
“Second, Eliquis is safer than warfarin. There is no "big pharma" conspiracy here.”

That’s your opinion. Just its prohibitive price speaks volumes.



Edited 1 time(s). Last edit at 02/07/2019 09:43AM by Catherine.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 09:38AM
Be patient, it’s just a matter of time before Lawyers get involved.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 10:29AM
Quote
Catherine
That’s your opinion. Just its prohibitive price speaks volumes.

No, it's not my opinion. It's the data.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 11:32AM
The data at this juncture is unreliable. Eliquis has not been around long enough to yield dependable data, whereas my INR nurse has patients in their eighties who’ve been on Coumadin for 20-30 years.



Edited 2 time(s). Last edit at 02/07/2019 01:29PM by Catherine.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 12:09PM
...besides, why would any drug company release a life altering/threatening medication first then years later an antidote? Greed?

FDA approved Eliquis in 2012;
Andrexxa, the antidote, approved in 2018. Really?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 02:07PM
Quote
Catherine
...besides, why would any drug company release a life altering/threatening medication first then years later an antidote? Greed?

FDA approved Eliquis in 2012;
Andrexxa, the antidote, approved in 2018. Really?


Wht are you saying that Eliquis is a life altering/threatening medication?

I am new to Afib. Doc prescribed Eliquis. Reading posts like this freak me out and I want to know if. I need to get with my Dr and find out why she would prescribe such a dangerous drug without even a hint that there are issues.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 02:48PM
Life altering because it prevents clots (strokes); life threatening because of bleeding as in the OP’s case.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 02:59PM
The NOACs (Eliquis, Xarelto) are NOT dangerous. Warfarin is actually more dangerous. The reversal agents for the factor Xa anticoagulants probably even work faster than the Vitamin K antidote for Warfarin (12+ hours). The downside is cost. Eliquis costs more than warfarin ($100s/month vs $10s/month, probably) and if you ever had to have the Eliquis reversal agent then get ready for a multi-thousand dollar fight with your insurance company over it. Very unlikely event, however.

I think a lot of the fear stems from the idea of uncontrolled bleeding and anticoagulation. Well, uncontrolled bleeding can kill you whether you're anticoagulated or not. Also, bleeding can be controlled even when you are anticoagulated. It's perfectly fine to be nervous about it. I was. Here are some things you can do to perhaps make yourself less nervous: 1) Carry a medication card in your wallet or wear a medical bracelet indicating your anticoagulation status. EMTs or ER staff will find this. 2) Carry a first aid kit with you. If you're engaged in outdoor activities potentially far away from population centers then you can treat cuts or puncture wounds. 3) Get some quick-clot. That's what the Army uses for field dressings. Doubt you'd ever use it but it's cheap, available in drug stores or WalMarts and if it gives you piece of mind, then it's worth the few bucks you spend on it.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 03:05PM
Kate, don’t freak out, we’re all in the same boat. I can’t speak for the others, but even though I’m into my third year with P- AFib, still, having it inexplicably come on freaks me out.

Have you snooped around this website? Go to [afibbers.org] Some amazing information that has helped me a lot.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 03:23PM
Plavix has ongoing lawsuits, even though it’s application is a little different; Xarelto has ongoing lawsuits. Eliquis, not yet.

Here is the sutuation with Pradaxa.

Pradaxa Lawsuit – Pradaxa Legal Claims & Lawsuit Information. At the time of its 2010 approval, blood-thinner Pradaxa had no available antidote. It was responsible for serious bleeding events, including death in thousands of patients. Since it was introduced, Boehringer Ingelheim has faced thousands of Pradaxa lawsuits ...
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 03:30PM
Pradaxa had issues with GI bleeds, yes. Eliquis is safer because of the 2x/day dosing.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 04:51PM
Catherine, you're tossing out a lot of fear mongering misinformation. I'm not even sure where to begin but wolfpack made a good start on it.

A few points:

1- OP's problem was major injury to his spleen and kidney, and that's guaranteed to produce massive bleeding even without an anticoagulant. Calling Eliquis life threatening is serious fear mongering.

2- Lawyers file lawsuits. It's what they do to make money and the existence of lawsuits says absolutely nothing about the safety or efficacy of a drug. It's utterly meaningless and most drugs do end up producing lawsuits. You'll note that those lawsuits are always aimed at patented drugs, not generics. That's because the lawyers only go for the deep pockets. They couldn't care less about public safety.

3- Strokes represent a much greater threat to people with afib than bleeds. Anticoagulants and stroke are a risk/benefit balance and always will be.

4- Eliquis and Pradaxa have been on the market for years and their safety profiles are well understood. The data are not "inadequate."

I could go on but really, please try to balance your comments and use more facts than scare tactics. There are people reading these threads who are new to afib and don't know who or what to believe. If you're going to tell people a drug is dangerous then you need to be providing objective evidence to support that claim. Vague statements about lawsuits, "inadequate data" and scary anecdotal stories aren't facts.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 06:10PM
One additional comment on risk of blood clots with Afib. On the question of, does someone with controlled afib need to be on an anticoagulant, my EP replied that at that time (about 3 years ago) studies had not been able to show a statistical difference in the risk of clotting between controlled and uncontrolled populations.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 06:20PM
I appreciate the clarifications. I was exaggerating when I said "freaking" but it does somewhat alarm me to read that a medicine that I was told I needed could also do great harm. I knew there was a bleeding risk, but was told the benefit outweighed the risk (at least for now).

Anyway, people (and this is not directed at anyone in particular) do need to stick with facts.

I'm still in the learning phase and while some things are trial and error, I'm not gonna be a Guinea pig with a medicine 😕. I read the OP and it does seem that the Eliquis is not the main problem. I hope he is doing better.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 06:53PM
Carey, go back and read the OP’s post and stop inserting your script into what YOU think has happened to him.

I don’t appreciate your accusing me of “fear mongering” and censoring the forum. Instead, I would have hoped you would have addressed some of the points I made; for example, you bandy about the positive research and data, etc. on a drug that is comparatively new, and you express no concern about it being dispensed without an antidote.

I might have mentioned, in a past post, when my husband was hospitalized after valve replacement surgery, the gentleman in the next bed was bleeding internally and for fwo days his doctors were unable to find the source. He was scheduled for exploratory surgery the next morning. He was on Xarelto and they had no antidote.

Carry on.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 06:57PM
GaryPNW - On the risk of blood clots and controlled Afib..... There are several factors that help contribute to elevated blood viscosity aka hyperviscosity and there are corresponding lab tests that can help one monitor the status of what makes blood hyperviscous also called: thick, sticky blood.

When I began my AF journey, the only anticoagulant available was warfarin/Coumadin. I tried that but had significant difficulty in maintaining proper range consistently because of a low blood platelet count so I embarked on research to find what could be done to lessen the causes of hyperviscosity and I managed to stay clot free even during very extended periods of AF with the use of nattokinase and other supplements...plus diligent marker testing.

I'm not suggesting you follow this approach for all of the obvious reasons... but you can learn more by doing a search in the archived posts on nattokinase which is what I used to stay safe before and after my ablation in 2003 - plus also reading through these specific posts:

Start with this on " Lumbrokinase for Clot Risk Prevention "
[www.afibbers.org]
and then at the end of the report are the other links to posts on this same topic...on the risk factors which are important to assess for your specific situation.

* Silent Inflammation

* Sticky, thick blood - Risk of Stroke and MI

* Clot Risk

Best to you,

Jackie
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 07:33PM
Jackie. if I had the courage, I would spin off Warfarin as I don’t think it is a benign medication, as well.

I have akways relied on diet, supplements and lifestyle changes versus drugs to treat my cancers and now my AFib. That’s why when I landed on the “Strategy” section of this forum, it was right up my ally. I attribute the protocol in the Strategy responsible in controlling my ectopics and shortening the AFib episodes.

I always question my doctors, and the meds they dispense.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 08:34PM
Not sure if I posted here on this or not...but Dr. Natale's assistant said that they don't use the CHAD score anymore to determine whether or not to take you off the Eliquis - they use the TEE. I am hoping to get another one done sometime in the next few months and then see what they have to say....

Not loving the idea of being on a blood thinner, after seeing what a big deal it can be if you get injured...makes me feel very vulnerable as you never know if someone is going to rear end your car or what might happen. For my brother in law, it was just a fall in his kitchen.

Geezzz...Barb
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 09:10PM
Quote
Catherine
Carey, go back and read the OP’s post and stop inserting your script into what YOU think has happened to him.

It's not my script. They removed his spleen and kidney following a fall, which clearly indicates those organs were severely injured. That sort of injury will produce severe bleeding regardless of anticoagulants, and surgeons don't remove organs because of Eliquis.

Quote

I don’t appreciate your accusing me of “fear mongering” and censoring the forum. Instead, I would have hoped you would have addressed some of the points I made; for example, you bandy about the positive research and data, etc. on a drug that is comparatively new, and you express no concern about it being dispensed without an antidote.

Nobody's censoring the forum. I'm sorry if I offended you, but making alarming statements that aren't entirely factual comes across as fear mongering and can have that effect on people new to afib. I'm just asking you to consider the audience and stick to facts when you make alarming statements. I didn't address your concerns point by point because I don't have hours to spend composing a reply full of the scientific citations that would be required to address them.

You know that most drugs don't have antidotes, right? So I'm not sure what you think is special about Eliquis or what you're looking for on that point. It's quite possible that withholding NOACs from the market due to a lack of antidote would have resulted in more bleeds and more deaths in the intervening years since they have a lower bleed risk than warfarin. I'm getting tired of repeating this but warfarin has a much longer half life than any of the NOACs and the antidote takes upwards of 12 hours to become effective. It's no panacea.

And above all, an antidote is now available for Eliquis and Xarelto, which is pretty important info you should have mentioned. It's omissions like that that made your posts seem rather fear monger-y.

Quote

I might have mentioned, in a past post, when my husband was hospitalized after valve replacement surgery, the gentleman in the next bed was bleeding internally and for fwo days his doctors were unable to find the source. He was scheduled for exploratory surgery the next morning. He was on Xarelto and they had no antidote.

Xarelto has a half life of 5-9 hours, so it wasn't even a factor by the end of day one. Sometimes people bleed and sometimes they can't find the source. It happens but fortunately its rarely fatal. Please don't imply that Xarelto was the cause of his bleeding because it wasn't. Anticoagulants do not cause bleeding.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 09:22PM
Anticoagulants do not cause bleeding. -------

Once bleeding starts anticoagulants promotes it.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 07, 2019 09:54PM
Quote
Elizabeth
Anticoagulants do not cause bleeding. -------

Once bleeding starts anticoagulants promotes it.

Well, that's closer to the truth but "promotes" isn't the word I would use. They delay coagulation exactly as the name implies. They do not cause, initiate, promote or do anything else. They only delay coagulation.

I know it seems like I'm mincing words here but there's a widespread fear of anticoagulants that is irrational and unrealistic and I don't think we should promote it. Even more irrational and unrealistic is the notion that warfarin is some sort of safe haven, a good old "tried and true" drug that's safe. No it's not. It's less safe than the NOACs and until someone has evidence to the contrary, I think we're doing people a disservice by suggesting otherwise.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 08, 2019 07:53AM
Quote
GaryPNW
One additional comment on risk of blood clots with Afib. On the question of, does someone with controlled afib need to be on an anticoagulant, my EP replied that at that time (about 3 years ago) studies had not been able to show a statistical difference in the risk of clotting between controlled and uncontrolled populations.

That's why CHADs doesn't differentiate, it applies to Afib whether controlled or not. So your EP statement in no way negates the evidence for use of anticoagulant with Afib.

What does it mean to be controlled in this context, did you ask him/her? Controlled as in duration and frequency? Controlled as in having TEE with certain results?

There are recent studies which are attempting to assess risk with stratified Afib. Until that's done, self-supplementing as an alternative to NOACs because of some parameter like elevated blood viscosity (even if it could be reliably and repeatably measured) and/or your perception of how controlled your Afib is completely lacks evidence compared to CHADs or TEE. With regard to the latter, I have confidence Natale has the evidence to support his approach.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 08, 2019 01:46PM
Quote
tobherd
Not sure if I posted here on this or not...but Dr. Natale's assistant said that they don't use the CHAD score anymore to determine whether or not to take you off the Eliquis - they use the TEE.

I'm guessing this (not using CHAD score) is for those who've had their LAA worked on in an ablation, not the overall patient population. In that case, Shannon goes into the TEE parameters in this post <[www.afibbers.org]

George
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 08, 2019 01:51PM
I think George is right. With an isolated LAA your CHADS score is secondary to the TEE results, but for everyone else I think they still do use CHADS.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 10, 2019 03:01PM
Quote
safib

One additional comment on risk of blood clots with Afib. On the question of, does someone with controlled afib need to be on an anticoagulant, my EP replied that at that time (about 3 years ago) studies had not been able to show a statistical difference in the risk of clotting between controlled and uncontrolled populations.

That's why CHADs doesn't differentiate, it applies to Afib whether controlled or not. So your EP statement in no way negates the evidence for use of anticoagulant with Afib.

What does it mean to be controlled in this context, did you ask him/her? Controlled as in duration and frequency? Controlled as in having TEE with certain results?

There are recent studies which are attempting to assess risk with stratified Afib. Until that's done, self-supplementing as an alternative to NOACs because of some parameter like elevated blood viscosity (even if it could be reliably and repeatably measured) and/or your perception of how controlled your Afib is completely lacks evidence compared to CHADs or TEE. With regard to the latter, I have confidence Natale has the evidence to support his approach.

Sorry safib, I can see my post didn't make the point very well. Since I had had two persistent AF episodes, my EP was urging me to begin taking Eloquis.(apixaban) to prevent the risk of clotting. At the time I had a CHAD score that would not have indicated blood thinners as appropriate. I posed the question to him that since I had only had 2 episodes of AF over a period of 7 years, why would I need a blood thinner since I was most always in NSR? His response was that the limited studies at the time did not show that a person with previous episodes of AF but not in AF would have any less risk of clotting than a person experiencing AF, therefore anticoagulants would be appropriate in my particular case. He admitted that with larger studies in the future differences in clotting risk among AF groups may emerge. After resisting for some period of time, I did finally relent after my 3rd episode of persistent AF and cardioversion, I had previously been on a regimen of one 325 aspirin per day for several years (which I felt totally comfortable with) but I did notice less bleeding from skin cuts and flossing after switching to eloquis, which is logical when considering the differences in clotting factors that the two drugs affect.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 10, 2019 06:25PM
Of note, the 2019 afib guidelines completely removed aspirin. It has no use in afib.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 10, 2019 07:06PM
Then why does dr Natalie say to take an aspirin for life when you have a Watchman? Or if not for life , as I know you will say, than why does he say to take it for a certain length of time?

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 10, 2019 09:55PM
Probably because aspirin is useful in cases where platelets encounter anything other than smooth endothelium, like stents or an occlusion device.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 11, 2019 12:20AM
Quote
wolfpack
Probably because aspirin is useful in cases where platelets encounter anything other than smooth endothelium, like stents or an occlusion device.

That's the answer. Aspirin is useful for preventing platelets from clumping on foreign objects, but for afib treatment it's no longer considered to have any role.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 11, 2019 11:54AM
so reading thru the comments because I really want to take ibuprofen for this potential kidney stone or whatever pain it is. (appt w/ urologist tomorrow.) I take xeralto but looking at that scoring thing as i understand it.. If you have or had afib that is factored in. The female part was taken out. So i don't need to count that. But i do have high BP. So that is just 1 point? Not 2 (for the female part). None of the other factors seem to fit for me. I did have some problems when i was on metrop (and had to take 3 days of lasix) but i truly think that was the drug b/c i am fine now. My BNP blood test went down way below normal. Plus outside even the kidney stone issue- do i NEED to take this for a YEAR (at least?) i have 2 friends who have afib.. one is on dofetilide (like me) and went in the hospital to get on it- and did not go home on any blood thinner. THe other friend goes in and out. She takes solotel PIP and elaquis for a few days after.. then stops both. Is there an SOP?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 11, 2019 01:21PM
Quote
bettylou4488
so reading thru the comments because I really want to take ibuprofen for this potential kidney stone or whatever pain it is. (appt w/ urologist tomorrow.) I take xeralto but looking at that scoring thing as i understand it.. If you have or had afib that is factored in. The female part was taken out. So i don't need to count that. But i do have high BP. So that is just 1 point? Not 2 (for the female part). None of the other factors seem to fit for me. I did have some problems when i was on metrop (and had to take 3 days of lasix) but i truly think that was the drug b/c i am fine now. My BNP blood test went down way below normal. Plus outside even the kidney stone issue- do i NEED to take this for a YEAR (at least?) i have 2 friends who have afib.. one is on dofetilide (like me) and went in the hospital to get on it- and did not go home on any blood thinner. THe other friend goes in and out. She takes solotel PIP and elaquis for a few days after.. then stops both. Is there an SOP?

Isn't the'Eliquis needed if and before and when a person goes into Afib?

With the new guidelines, I'm also a 1 (HBP).

I have had friends go off of it too when they have been without an episode for 6 months to a year. I really don't understand why because I still think the fact that you have Afib should be a consideration.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 11, 2019 07:00PM
Quote
bettylou4488
do i NEED to take this for a YEAR (at least?)

What's your afib situation? Are you having episodes? If not, when was the last one? You say you're a CHADs-Vasc 1, so that means anticoagulants are a judgement call. The biggest factor in that decision is going to be afib activity.

The other question is how long do you expect to need ibuprofen? It's not that ibuprofen is completely contraindicated; it's just that it shouldn't be taken with anticoagulants long term. I've been told by two EPs that taking it for a few days is okay, but a few weeks is not.

And, really, if it's not going to be long term, I'd go for the Norco. You won't become addicted in a few days or even weeks, and with kidney stones you might need a lot more than ibuprofen. I've seen people passing kidney stones who were in horrible pain even with morphine.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 12:04PM
I was emailing with a guy in New Zealand and he was paying $30 a month for Eliquis. The high prices in the U.S. are to take up the slack from those really inexpensive costs in other countries.

I've looked into the comments of many people who are taking Eliquis. Most of them don't like it. Like many things you mainly hear from the people who tend to get relatively positive results. You rarely hear from the people having problems after the drug gets into the public.
[ethicalnag.org]

Check this out. They're already in the 2nd stage trials.
[www.prnewswire.com]
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 02:37PM
The article said that 20% of all strokes are because of AF, so what is the 80% due to?

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 03:28PM
Quote
alxndr01
I've looked into the comments of many people who are taking Eliquis. Most of them don't like it.

I don't think that's true. I know a lot of people on Eliquis and the other NOACs and the vast majority have no side effects from it at all.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 03:29PM
Quote
Elizabeth
The article said that 20% of all strokes are because of AF, so what is the 80% due to?

All those other things the CHADS-Vasc score measures.

But keep in mind that only about 5% of the population has afib, so for 5% of the population to account for 20% of the strokes is a pretty damn big number.
Joe
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 05:25PM
Quote
alxndr01
I was emailing with a guy in New Zealand and he was paying $30 a month for Eliquis. The high prices in the U.S. are to take up the slack from those really inexpensive costs in other countries.

I've looked into the comments of many people who are taking Eliquis. Most of them don't like it. Like many things you mainly hear from the people who tend to get relatively positive results. You rarely hear from the people having problems after the drug gets into the public.
[ethicalnag.org]

Check this out. They're already in the 2nd stage trials.
[www.prnewswire.com]

Don't know about NZ, Alex. In Australia the government subsidizes approved pharmaceuticals. Don't know if our government has a special deal with the manufacturers?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 05:30PM
Carey said:
But keep in mind that only about 5% of the population has afib, so for 5% of the population to account for 20% of the strokes is a pretty damn big number.

The CDC said 2 percent and 9 percent that adds up to 11% little more than 5%

According to the Centers for Disease Control and Prevention (CDC), approximately 2 percent of people younger than 65 years old have AFib, while about 9 percent of people ages 65 and older have it.

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 06:11PM
Quote
Carey

The article said that 20% of all strokes are because of AF, so what is the 80% due to?


All those other things the CHADS-Vasc score measures.

.

I don't believe it is currently known what is the cause of the 20% or the 80% who have strokes. It would require prospective studies which stratify groups into afib and other risk factors (age, obesity, hypertension, etc.) which would show causation. These are very complex factorial experiments. Or observational studies where the other risk factors are adequately controlled which would only show correlation. Maybe something has been done, but I doubt it is conclusive. References?

Let's put it a different way. The elderly which dominate the afib population is full of people with risk factors. Think about the problem of separating all of that out to find the cause of the stroke. You can't simply count the fraction of those who stroke with afib, etc.. There is also research which shows the lack of temporal correlation of afib episodes and stroke, which is very puzzling. And then there is the question of what it means to have afib

I would still follow CHADs recommendation and with NOACs while waiting for more data and a better alternative.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 07:23PM
Quote
Elizabeth
According to the Centers for Disease Control and Prevention (CDC), approximately 2 percent of people younger than 65 years old have AFib, while about 9 percent of people ages 65 and older have it.

Right. So that averages out to about 5%. You don't add the two percentages.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 08:29PM
Well then, there are 9% of people over 65. I also believe it is pretty hard to say with certainty how many people have strokes due to AF and also if they were taking a anticoagulants at the time. It doesn't state on a death certificate if a person had AF or exactly what they died of.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 13, 2019 10:33PM
The vast majority of afibbers on this forum have drastically altered their eating habits and lifestyles for the better so vastly diminishing their risk of stroke from all causes.

Shouldn't that count to get a point or two deduction from the CHADS score?

The CHADS scoring system is a very blunt instrument and being a bit cynical is more to cover the medical professions rear ends from lawsuits as in “I was strictly following the guidelines”.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 12:55AM
Quote
Dean
The vast majority of afibbers on this forum have drastically altered their eating habits and lifestyles for the better so vastly diminishing their risk of stroke from all causes.

They have? Not sure if that's true and how you would know it, but even if it is true, what's the stroke rate for people on this forum?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 04:01AM
Quote
Carey

The vast majority of afibbers on this forum have drastically altered their eating habits and lifestyles for the better so vastly diminishing their risk of stroke from all causes.

They have? Not sure if that's true and how you would know it, but even if it is true, what's the stroke rate for people on this forum?

From what we can tell its about Zero.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 10:33AM
"From what we can tell" would be the key phrase there given there's no way to know if someone here has a stroke. But my question was really more rhetorical. I don't know why Dean thinks the vast majority of people here have drastically altered their eating habits and lifestyle. I rather doubt they have. I also don't know why he thinks doing so reduces stroke risks. A few lifestyle changes will, such as losing weight to avoid diabetes, quitting smoking, and so forth, but I'm unaware of any data showing that dietary changes can alter stroke risk.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 01:05PM
Well Carry,

If you change your life style, cut out alcohol, reduce weight, lower blood pressure, eat low carb, get off the couch etc.
You will reduce your afib load and change your CHAD score to a point where you won't need any blood thinners which will stop its calcification action.
A better alteritive then would be nattokinase or Natto as well. It's at least thinning my blood and has lowered my figrinogen level, it's also making my finger and toe nails grow faster. Which means that calcium which does the damage to your artries and causes strokes is now going where it belongs, to my bones.

Some more info for you Carry.

Natto. There isn't pill like it

NATTO ADVANTAGES, the wonder food.

1, probiotic.

There is up to 1 billion probiotics in a gram of natto, therefore in 40 grams of natto you get about 40 billion probiotics.


2, vitamin K2.

Natto is high in vitamin K2. In 40 grams of natto there is about 400 mcg of K2, which is enough for 3 days.
Vitamin K2 has 2 enzymes,

Matrix Gla-protein (MGP)
Osteocalcin
“Gla” is short for glutamic acid. Glutamic acid is imported into the cells in the wall of your arteries, where it binds to calcium and removes it from the lining of your blood vessels.

Once removed from your blood vessel lining, vitamin K2 then facilitates the intergration of that calcium into your bone matrix by handing it over to osteocalcin,. The osteocalcin then helps cement the calcium in place.


Coronary artery calcification increases atrial fibrillation therefore redirecting calcium to where it belongs reduces afib.



3, the farmented soybean.

The soybean contains genistein which has antiarrhythmic properties, among other benifits.



4. Nattokinase

One of the best known effects of Nattokinase is that it reduces clotting in blood by dissolving fibrin.

When fibrin escapes to blood, it binds platelets together resulting in a clot.

In young people, production of plamin - an agent that reduces synthesis of fibrin - is at its maximum. However, as people get older and in some disease conditions, less plasmin is produced thus the risk of developing clots. Nattokinase contains agents that work like plasmin and therefore is used in place of plasmin. It is also 4 times more effective than plasmin.

By countering the production of angiotensin converting hormone (ACE), (which reduces the elasticity of blood vessels; consequently, the vessels become narrower. Narrow vessel lead to high blood pressure.) Nattokinase makes the blood vessels soft and supple , it increases the supply of blood to all parts of the body and lowers blood presure.



Edited 1 time(s). Last edit at 02/14/2019 01:21PM by colindo.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 03:59PM
Quote
colindo
Well Carry,

If you change your life style, cut out alcohol, reduce weight, lower blood pressure, eat low carb, get off the couch etc.
You will reduce your afib load and change your CHAD score to a point where you won't need any blood thinners which will stop its calcification action.

I've never had a weight problem, my BP was fine up until a couple of years ago, I eat a good diet, I exercise regularly including 100+ miles per week on a bike, and I stopped all alcohol for a while to see if that mattered. Nope. Made no difference. This whole theory that afib is a lifestyle disease is a crock, in my opinion. Lifestyle can influence it and make it better or worse, but it's not a cause.

Natto is fine and dandy but I've seen no evidence that it's as effective as warfarin nor have I see safety or dosing studies. So until I do, proven anticoagulants with known safety and dosing profiles are my preference. I don't believe they're harmful and I don't think natto is a miracle drug.

PS- Could I ask the favor that you spell my name correctly? It's right there at the top of all my posts.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 04:43PM
Sorry Carey, winking smiley spelling is not my greatest strength.

Nattokinase. I wonder if there was money to be made from it, would we see evidence of its effectiveness?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 05:43PM
Quote
colindo
Well Carry,

If you change your life style, cut out alcohol, reduce weight, lower blood pressure, eat low carb, get off the couch etc.
You will reduce your afib load and change your CHAD score to a point where you won't need any blood thinners which will stop its calcification action.
A better alteritive then would be nattokinase or Natto as well. It's at least thinning my blood and has lowered my figrinogen level, it's also making my finger and toe nails grow faster. Which means that calcium which does the damage to your artries and causes strokes is now going where it belongs, to my bones.

Some more info for you Carry.

Natto. There isn't pill like it

NATTO ADVANTAGES, the wonder food.

So you are advocating ignoring CHADs and not taking prescribed anticoagulants, and instead proceeding with trying to lower CHADs enough that eventually you no longer need to take anticoagulants (according to CHADs!). You then follow this by the natto (miracle drug). The problem with your plan is there is no rigorous validation of any of it. In addition, there is plenty of risk in the interim while you are trying to reduce CHADs, if you can do it at all. This in addition to the unknown safety and dosing and efficacy data for natto.

These kinds of approaches which go against the best evidenced-based medical opinion are ill-informed and potentially dangerous.
Joe
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 06:00PM
The best i ever got from one Cardiologists was - eat a good diet eye rolling smiley. The other two EPs never mentioned anything about diet sad smiley
Based on my very limited experience and the likelihood that the majority of patients go with 'Professional advise' i suspect drastic diet and lifestyle changes aren't commonly implemented?

Have been wondering Colindo [Which means that calcium which does the damage to your artries and causes strokes is now going where it belongs, to my bones.]
It's because my understanding is that calcium deposition only happens once the intima (endothelium) is damaged and some lipoprotein (small LDL?) enters and settles in the media which in turn causes other reactions - like calcium deposition. That in itself is not the immediate problem.
Isn't the real danger inflammation and when that plaque gets 'liquefied' and the gunk (technical term smiling smiley) enters the blood stream and forms a clot....
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 06:01PM
Quote
colindo
Nattokinase. I wonder if there was money to be made from it, would we see evidence of its effectiveness?

Well, we'd at least see research into it. See, that's the rub. Industry will only fund research if there's a profit in it for them, so that leaves it to governments and non-profit organizations to fund the rest. The trouble is, those research dollars are limited and there's fierce competition for them. You're never going to get a study for something like natto funded when it competes with treatments for things like cancer, HIV, malaria, Ebola and so on.

It's possible that someday natto could be used in a way that's patentable and could end up being turned into an anticoagulant. Lots of drugs are made from common plants and substances that can't be patented on their own.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 06:44PM
Quote
safib

Well Carry,

If you change your life style, cut out alcohol, reduce weight, lower blood pressure, eat low carb, get off the couch etc.
You will reduce your afib load and change your CHAD score to a point where you won't need any blood thinners which will stop its calcification action.
A better alteritive then would be nattokinase or Natto as well. It's at least thinning my blood and has lowered my figrinogen level, it's also making my finger and toe nails grow faster. Which means that calcium which does the damage to your artries and causes strokes is now going where it belongs, to my bones.

Some more info for you Carry.

Natto. There isn't pill like it

NATTO ADVANTAGES, the wonder food.


So you are advocating ignoring CHADs and not taking prescribed anticoagulants, and instead proceeding with trying to lower CHADs enough that eventually you no longer need to take anticoagulants (according to CHADs!). You then follow this by the natto (miracle drug). The problem with your plan is there is no rigorous validation of any of it. In addition, there is plenty of risk in the interim while you are trying to reduce CHADs, if you can do it at all. This in addition to the unknown safety and dosing and efficacy data for natto.

These kinds of approaches which go against the best evidenced-based medical opinion are ill-informed and potentially dangerous.

If you have a CHADs score of 2 you have a 2% chance of a stroke, then if you take a blood thinner you have a 3% chance of a blood bleed. So with those odds doing nothing is a good bet or taking nattokinase is going to at lest improve the odds.
Joe
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 07:52PM
Can see your reasoning there, Colindo.
FWIW, i had a bilateral inguinal hernia repaired 10 days ago (they told me that i didn't go into AF during the laproscopic procedure which lasted a bit over 1 hour). However, when i awoke from the anesthesia i asked the nurse about it and she said that i'm in and out of AF. So i asked her if it showed a P wave and she said that it does show one eye rolling smiley. i'd guess my HR was somwhat irregular. Wasn't in a position to see the monitor.
Had to go off eliquis 3 days prior and 10 days post. Have since resumed my daily Natto, raw garlic and tumeric (some fresh root) and i intend to stay off eliquis until i have an AF episode again (hope it will never happen)
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 07:59PM
Quote
colindo
If you have a CHADs score of 2 you have a 2% chance of a stroke, then if you take a blood thinner you have a 3% chance of a blood bleed.

Strokes and bleeds aren't equal things so you're comparing apples and oranges. The majority of bleeds are GI bleeds and are easily controlled. The only bleeds to really worry about are cranial bleeds, and that's going to be a much smaller number.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 09:19PM
Never the less 98% chance of not having a stroke are good odds. No one is going to guarantee taking blood thinners is going to improve those odds much.



Edited 1 time(s). Last edit at 02/14/2019 09:42PM by colindo.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 09:42PM
Quote
colindo
Never the less 98% chance of not having a stroke are good odds. No one is going to guarantee blood thinners is going to improve those odds much.

An ablation has about a 2% risk of serious complications. So you think having an ablation every year of your life is good odds? You might want to do the math and ask what those odds are after 10 years (answer: 18% risk).

I don't know what you mean about guaranteeing blood thinners improving those odds. There's no question they reduce stroke risk. I think you're really reaching to justify substituting lifestyle changes for anticoagulants. Go ahead if that's what you want to do, but I think you should make it clear to people reading this forum that the risks are extreme.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 09:51PM
The thing is Carey some of us don't believe your theories. My sister started blood thinners 12 months ago, today she in the hospital with a stroke and blood bleed. Thinners didn't help to stop her stroke.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 10:02PM
Carey said the following: I've never had a weight problem, my BP was fine up until a couple of years ago, I eat a good diet, I exercise regularly including 100+ miles per week on a bike, and I stopped all alcohol for a while to see if that mattered. Nope. Made no difference. This whole theory that afib is a lifestyle disease is a crock, in my opinion. Lifestyle can influence it and make it better or worse, but it's not a cause.

Gee Carey do you think the AHA is blowing smoke? Although I do agree that AF is in our DNA. But, what do you think of the following? There is also merit in lifestyle.

More bad news for diet soda lovers: Drinking two or more of any kind of artificially sweetened drinks a day is linked to an increased risk of clot-based strokes, heart attacks and early death in women over 50, according to a new study by the American Heart Association and American Stroke Association.

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 10:18PM
Colindo:

I am sorry to hear about your sister, hopefully she will recover fully. I havn't kept count but there has been quite a few people that have come out and told of their relatives and also themselves that have had strokes and have been on a anticoagulant. You know a number of years ago my doc. put me on Coumadin, I couldn't take it as it made my eyes bloodshot, and blood pooling in my thumb, quitting the Coumadin led to my coughing up some blood clots, I was lucky that I did. I do not advise anyone as to take or not take a bloodthinner, we have to decide on all info that we can get.

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 10:24PM
Quote
Carey
This whole theory that afib is a lifestyle disease is a crock, in my opinion. Lifestyle can influence it and make it better or worse, but it's not a cause.

I concur.

I got AF at 6’0”, 170 lb, BP 115/70, running 35 miles/wk, eating a zero-fat diet and, of course, not smoking. What was I supposed to do to rend the “Scarlet AF” from my chest?

My dad got AF at age 50. My mom at age 71. Hmmm...

If poor diet and holding down sofas from the deleterious effects of anti-gravity were the sole cause of AF, it’d be a lot more prevalent than 5% of the population!
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 10:58PM
Quote
wolfpack

This whole theory that afib is a lifestyle disease is a crock, in my opinion. Lifestyle can influence it and make it better or worse, but it's not a cause.


I concur.

I got AF at 6’0”, 170 lb, BP 115/70, running 35 miles/wk, eating a zero-fat diet and, of course, not smoking. What was I supposed to do to rend the “Scarlet AF” from my chest?

My dad got AF at age 50. My mom at age 71. Hmmm...

If poor diet and holding down sofas from the deleterious effects of anti-gravity were the sole cause of AF, it’d be a lot more prevalent than 5% of the population!

What's running 35 miles a week doing to your heart, Carey did much the same thing?

I can only go by my own experence with lifestyle changes, getting my weight down, lowering my blood presure etc. was a big help to my afib burden. And I have not needed an ablation.
I have gone from 2 to 3 afib events a month to 3 events in the last 9 months and 2 of those was due to bad magnesium.

So telling forum members that lifestyle changs is a crock is not good advise. BTW not all afibbers are like yourself and Carey.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 11:02PM
We read about people that do a lot of exercise which leads to their getting AF, actually running is not supposed to be that good for you. I don't recall the name of that guy that was a runner and wrote a book about it, he dropped dead I believe in his 50s, I knew a man that golfed at the club I golfed at, he was a runner, he too dropped dead while running, a fast walk is better. Sorry but a zero fat diet is not good for you, we do need fat, the cholesterol in our brain needs it. I don't mean bad fats, but olive oil, walnut oil, avocado oil, butter is ok. I also say that AF is in our DNA however, I may not have gotten AF if I hadn't taken too much thyroid meds which led to my being hyper and going into AF.
Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 11:20PM
Quote
colindo
So telling forum members that lifestyle changs is a crock is not good advise. BTW not all afibbers are like yourself and Carey.

You misread me.

Lifestyle change IS a good choice, to the extent that a change can make a difference. I’m glad it did in your case.

I don’t believe any two afibbers are alike. We are all different. I simply reject the notion that lifestyle is to blame, all the time.
Joe
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 14, 2019 11:22PM
Agree with Liz, a zero fat diet is an unhealthy fad diet. Sadly, propaganda and junk science encouraged many to follow it sad smiley
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 12:49AM
Quote
colindo
So telling forum members that lifestyle changs is a crock is not good advise.

I didn't say that. I said lifestyle can affect afib and make it better or worse; it's just not the cause. You can and should improve your lifestyle to make your afib better. Just don't expect to cure it with lifestyle changes. Not going to happen.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 09:50AM
Suggesting to forum members that ignoring CHADs and anticoagulants (or using the natto miracle drug instead) while attempting to make lifestyle changes is likely worse advise, or in any case has far less validation. It is wrong to minimize the cumulative and not just annualized risk for ischemic stroke with afib, which in addition has significantly worse outcomes in the afib versus non-afib stroke population. One could similarly suggest foregoing ablation based on bad experiences your personally know or heard about. This whole "experiment of one (or a few)" thing is really poor judgment when it comes to anticoagulants and stroke.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 12:08PM
Carey, you said "This whole theory that afib is a lifestyle disease is a crock, in my opinion"

Safib, you assume an ablation is an option for all of us.
I also dont believe your stroke risk goes up yearly, and thats my opinion. Which used to be allowed on this forum.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 01:00PM
Quote
colindo
Safib, you assume an ablation is an option for all of us.
I also dont believe your stroke risk goes up yearly, and thats my opinion. Which used to be allowed on this forum.

It is not that your annual stroke risk goes up, it's that your cumulative stroke risk goes up (cumulative meaning your risk over a period of several years). The simplest model to explain this is coin flipping with a fair coin. The probability of getting a head in one flip is 0.5. For n flips it is 1 - (1 - 0.5)^n. So the probability of getting a head in n = 2 flips is 0.75 , and the probability of getting a head in n = 10 flips is .999. If you employ the same model for stroke, where the annual stroke risk is 2%, then the cumulative stroke risk is 18.3% over 10 years. Now there are issues with the model, but it is a good choice lacking long term longitudinal data . Better models would account for some fine tuning to allow for stroke incidence occurring continuously rather than once per year, or time variation of the stroke risk, or dependency of stroke events (having one stroke would make it more likely to have another). But it wouldn't change the results much. This isn't opinion, cumulative risks go up with time and models like this are well-validated.



Edited 1 time(s). Last edit at 02/15/2019 01:01PM by safib.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 01:13PM
Quote
safib

Safib, you assume an ablation is an option for all of us.
I also dont believe your stroke risk goes up yearly, and thats my opinion. Which used to be allowed on this forum.

It is not that your annual stroke risk goes up, it's that your cumulative stroke risk goes up (cumulative meaning your risk over a period of several years). The simplest model to explain this is coin flipping with a fair coin. The probability of getting a head in one flip is 0.5. For n flips it is 1 - (1 - 0.5)^n. So the probability of getting a head in n = 2 flips is 0.75 , and the probability of getting a head in n = 10 flips is .999. If you employ the same model for stroke, where the annual stroke risk is 2%, then the cumulative stroke risk is 18.3% over 10 years. Now there are issues with the model, but it is a good choice lacking long term longitudinal data . Better models would account for some fine tuning to allow for stroke incidence occurring continuously rather than once per year, or time variation of the stroke risk, or dependency of stroke events (having one stroke would make it more likely to have another). But it wouldn't change the results much. This isn't opinion, cumulative risks go up with time and models like this are well-validated.

And I ask why, why is my stroke risk after 10 years now 18.3%, what has caused that.? Is it my lifestyle, maybe?
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 02:32PM
Quote
colindo
And I ask why, why is my stroke risk after 10 years now 18.3%, what has caused that.? Is it my lifestyle, maybe?

Your risk didn't change. What happened is math.

Stroke risk is usually stated as risk per year. So if your risk of having a stroke in one year is 2%, over the course of 10 years you incur that 2% risk 10 times. As safib explained, that risk adds up. It's not 20% because it's not simple addition, but it does add up. The answer is the risk is 18.3% that you'll have at least one stroke in a 10 year period.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 03:11PM
Quote
Carey

And I ask why, why is my stroke risk after 10 years now 18.3%, what has caused that.? Is it my lifestyle, maybe?

Your risk didn't change. What happened is math.

Stroke risk is usually stated as risk per year. So if your risk of having a stroke in one year is 2%, over the course of 10 years you incur that 2% risk 10 times. As safib explained, that risk adds up. It's not 20% because it's not simple addition, but it does add up. The answer is the risk is 18.3% that you'll have at least one stroke in a 10 year period.

Will blood thinners stop that one stroke in 10 years?
As I said my sister is now in hospital with a stroke after being on thinners for 12 months, that is in fact true.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 03:14PM
Sure, the longer I live the more apt I am to get some kind of disease, the more I drive my car the more chance of getting in an accident, don't know the percentages of that but it is there. We can go on and on with this kind of maybe, perhaps. Also, I would say the longer one would be on a blood thinner the more a chance of getting a bleed, there are also numerous reports of getting a stroke while on the med., does that go up percentage wise the longer one is on the blood thinner? My mother was on Coumadin for about 6 years, she had to stop as she had internal bleeding.


Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 03:26PM
Colindo

Which blood thinner was she on? How is she doing?

Liz
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 05:06PM
Quote
colindo
And I ask why, why is my stroke risk after 10 years now 18.3%, what has caused that.? Is it my lifestyle, maybe?

It isn’t 18.3% AFTER 10 years. It’s 18.3% OVER 10 years. Your just looking at a 10-year window as opposed to a 1-year window.

It’s that whole “lies, damn lies, and statistics” thing. winking smiley
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 05:19PM
Quote
Elizabeth
Colindo

Which blood thinner was she on? How is she doing?

Liz

Its one of the newer ones but I am not sure what brand, I will ask her.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
February 15, 2019 06:20PM
Quote
colindo
Will blood thinners stop that one stroke in 10 years?
As I said my sister is now in hospital with a stroke after being on thinners for 12 months, that is in fact true.

No drug is perfect and anticoagulants don't prevent 100% of all strokes. Nothing does. So asking if they will stop that one stroke in 10 years isn't really a valid question. The question is will they reduce the chances of having that one stroke and the answer is yes.

Sorry about your sister. It's worth noting that strokes that occur while taking anticoagulants are very often due to poor compliance. You know, you get busy or you're traveling or your normal schedules are disrupted and you miss a dose, or two, or three. I've heard stories of people forgetting to take their anticoagulants for weeks.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
March 04, 2019 04:26PM
Quote
Carey

do i NEED to take this for a YEAR (at least?)

What's your afib situation? Are you having episodes? If not, when was the last one? You say you're a CHADs-Vasc 1, so that means anticoagulants are a judgement call. The biggest factor in that decision is going to be afib activity.

The other question is how long do you expect to need ibuprofen? It's not that ibuprofen is completely contraindicated; it's just that it shouldn't be taken with anticoagulants long term. I've been told by two EPs that taking it for a few days is okay, but a few weeks is not.

And, really, if it's not going to be long term, I'd go for the Norco. You won't become addicted in a few days or even weeks, and with kidney stones you might need a lot more than ibuprofen. I've seen people passing kidney stones who were in horrible pain even with morphine.

Thanks for this ... i am going to ask about taking ibuprofen.. turns out the kidney stone was not. I was SURE it was b/c it was the same pain starting as before. It now makes me wonder if i really had to have the giant bolder removed 3 years ago.. but i had a CT and that is not the issue. I do have skeletal issues though.. and the ibuprofen would help. I am NOT having episodes. I had 3 episodes from T-giving to new year and ended up a week in hospital to get on tykosin so i'm on that and xeralto and have been doing well. (I was taking metrop but that did not work well for me.) I am now just trying to understand if i truly need to be on xeralto or can i just take it if i go into a-fib..and how to get off the xeralto. (I just wrote out another thread for that one. ) thanks for taking the time to answer. i was off for a bit dealing with this other pain but trying to understand the blood thinner thing now better.
Re: Now I am really afraid to stay on Eliquis....today was an eye opener
March 15, 2019 07:38AM
There is a refersal Agent for Eliquis but dont recall name right now BUT how many hospitals, other than mAybe larger medical centers have it? Hopefully soon it will be available worldwide but wont be awhile. My gosh we cant even get enough supply of Shringrix so what makes us think that is coming anytime soon.
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