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Xarelto side effects

Posted by gmperf 
Xarelto side effects
January 16, 2016 10:24PM
I am wondering if any one has used Xarelto for a while and begun to experience some side effects.

I have been on Xarelto for @ two years. In the last month I started feeling hot flushing feeling in my leg and arms between 1-2 hours after I take it. I also have been feeling general pain all over my body some days over the last two months. It kind of hard to explain the pain - it feels like I have nerve pain all over, yet I can't pin point any direct locations.

I am wondering if I should switch to a different medication. I wonder if the Eliquis is basically the same thing as Xarelto.

Don
Re: Xarelto side effects
January 17, 2016 03:34PM
Hi Don - You may not have seen my post last June on Eliquis Side effects... [www.afibbers.org]... and I'm not sure if Xalerto and Eliquis are enough similar to be relevant but I do know it wasn't my imagination since now that I'm allowed to use the half-dose of Eliquis, I feel somewhat better and hope that, with time, at least some of my complaints/symptoms will resolve.

I certainly appreciate these NOACs for convenience and not having to worry about INRs etc, but I just don't tolerate these pharmaceuticals in my system. Perhaps you are also sensitive.

Check that Medschat link for Xalerto and see if you find something similar to what I found on Eliquis.

I sympathize with your situation. This is not pleasant.

Best wishes to you,
Jackie
Re: Xarelto side effects
January 17, 2016 06:32PM
Hello Jackie, It seems Xarelto has similar reported side effects.
It looks like the only alternatives are warfarin , or stop blood thinner all together,

I am 15 month post second Dr. Natale ablation. No afib since the second ablation.
I had one TEE that showed low LAA blood flow at 9 months after the ablation.
I am wearing a Zio Patch monitor this week to confirm no afib. Then according to Linda I can meet with Dr. Natale to discuss the Atriclip.
I wonder if I should have another TEE to confirm low LAA blood flow still.
I wonder how much of the low LAA blood flow information is theory and how much is fact. I can't seem to find any research about low LAA blood flow after an ablation that isolates the LAA. If this area is all too new and they don't really know, I wish I would be told that. Perhaps waiting a year or two before the Atriclip might make sense.

I appreciate the abundance of caution. I would like to have the information to make my own informed decision. After all I do make decisions that accept risk. I Hang Glide, fly airplanes, I feel I can make an informed decision in these areas.
I am 52 with a chads2vasc score of 0. This low LAA blood flow issue is the only reason to be on a blood thinner.

I know Dr. Natale believes that even with a chads2vasc score of 0, a person should be anti-coagulated. He told me that an afib stroke is devastating. He said he himself would be anti-coagulated if he had afib and a chads2vasc score of 0.

It is all a bit frustrating and I feel I am not involved with the decision making process as much as I would like.

I do appreciate your response and insights.

Don
Re: Xarelto side effects
January 18, 2016 03:25AM
Don,
Are you saying Dr Natale is saying that a 0 Chads score needs anticoags for afib in general or are you specially referring to a compromised LAA from ablation and low blood flow out of the appendage?
Yes reduced pumping velocity out of the LAA really negates a 0 CHADS score as clots could easily form.

What really needs to be studied is how long a clot would take to form with a reduced flow velocity but in NSR as opposed to AFIB and no LAA islolation and being in AFIB?
What happens if you have reduced flow capacity from a LAA isolation and go back into afib and have to stop anticoagulation for either elective surgery or in the event of an accident? Now this can be a double whammy being in AFIB and also having a compromised flow. Just food thought for my compromised brain...........

McHale.



Edited 3 time(s). Last edit at 01/18/2016 03:39AM by McHale.
Re: Xarelto side effects
January 18, 2016 06:42PM
McHale,

Dr.Natale said he himself would be anti-coagulated if he had afib and a chads2vasc score of 0. He did not hesitate when stating this. So according to this comment, I believe with a chads2vasc score of 0, he would recommend ant-coagulation. He recommended anti-coagulation for me when I had a chads2vasc score of 0, before the LAA isolation.

When I was at a patient conference for afib (Dr. Natale was a speaker at this conference), they talked about how the chads score came to be. Surprisingly it was based on a small patient population. It was also stated that with a 1 score, they really don't know what the plan should be. With a 0 score, well odds are a little more favorable to not be being anti-coagulated. It is not all that black and white. Plus it is simply playing the odds.

As far a blood flow in the LAA after isolation and while being in afib, who knows. I did think there are any studies to indicate what is happening in terms of blood flow. I would assume that if the atrium is fibrillating, then the LAA could be fibrillating as well. They believe that @ 90% of afib strokes are caused by the LAA. I would assume that means that when the atrium is fibrillating, the blood flow in the LAA is not moving.

It seems to me that much medical information is present to patients as "this is the way it is - It is black and white." When in reality it is not black and white. For example, the thinking on clot formation when in afib was 48 hours, then it went to 24 hours, now some research is saying much less time is needed. (Most doctor still quote 48 hours)
As a patient, I wish I would be presented more facts, and opinions being clearly represented as opinions. I would prefer it be stated the "current thinking is:" Or "we don't know" work fine as well.
In my estimation only about 25% patients really want the facts and the burden of making the hard decisions for themselves. They would rather have a doctor say this is what to do, "Im a doctor and I know best."

Since having afib and getting into the medical system, it has been a real eye opener. My experience is the the vast majority of doctors are almost worthless and many will do you harm if you are not careful. I had an EP say "let's do a nuclear stress test." I said "why, I have no symptoms to indicate a need." "Plus I had one two years ago that was fine." He said "ya but it been two years, thing change." (Im 52, normal weight) I said "first off I have no indications for a stress test and second I don't want more radiation." He said "well ok then let's just do a regular stress test". I said "no". He said "well ok, I guess since you are feeling fine, it is ok to not do the stress test."
This is one of the better doctors I have come across.

Thankfully there are the rare few like Dr. Natale that are truly the best and they will actually help you.

My rant for the day.....Don
ps. sorry for any grammar errors - in a hurry this morning)



Edited 2 time(s). Last edit at 01/18/2016 06:46PM by gmperf.
Re: Xarelto side effects
January 18, 2016 07:49PM
Hi Don - that's a good rant.

It can help to consider that blood tends to clot in a variety of situations and not all people who have strokes and heart attacks have Afib. However, the condition that sets one up for either is the sticky, thick blood factor or hyperviscosity... (driven by inflammation) and when thick blood tries to pass through 'bottlenecks' in areas such as where arteries branch off or become narrowed, clots can form there as well.

In the case of the LAA which is even more focused to a smaller area where thick, sticky blood accumulates easily when the pumping or clearance capacity out of that little chamber, sack or sock is less than optimal without arrhythmia and when in arrhythmia, also tends to pool for lack of efficacy. This is why anticoagulants are advised for afibbers.

My experience and observations over a period of 20 years dealing with afib is that while using blood thinners can certainly help and are often critically important, I felt compelled to learn more about what else causes or influences the rapid clotting tendency. Remember the quote from some of my posts: Churn cream, you get butter; churn blood, you get a clot.

Although I understand the reasons why, it disappoints me that doctors treating arrhythmia patients typically do not run the associated tests to determine the clotting risk risk factors by addressing the potential underlying causes of sticky blood.... as discussed in the Sticky, thick blood post. None of my cardiologists or EPs ordered tests to determine .....
Homocysteine
Fibrinogen
Ferritin
High Sensitivity or Cardiac C-reactive protein
Hemoglobin A1C
Lipoprotein (a)
Interleukin – 6
Oxidized LDL

....all important factors for determining hyperviscosity. Magnesium deficiency also allows platelets to clump or aggregate and none wanted to determine that either.

My focus is and always has been to make sure my risk of sticky blood is as low as possible by knowing my test numbers are good and my diet doesn't contribute to any of the factors. I did that without anticoagulants except for the first ablation period by various nutritional aids to help keep the blood thin and slippery. Of course, for the two latest ablations, I had to use the NOACs and continue to do so, but now that I can use the half-dose, I am adding back in some of the aids that I had to drop for fear of over-thinning. That helps keep my mind peaceful about CHADS2vasc scores considering my history, age and gender factors.

There's a lot one can do to help avoid adverse clotting but a priority should be knowing more than the CHADs score and focus on elements that underlie hyperviscosity. First step is finding a doctor to order those labs.

There are many previous posts on the fluid dynamics of blood flow or hemorheology. Classic book on that topic is The Origin of Atherosclerosis (An Introduction to Hemodynamics, Volume 1 (2001) by the late Kenneth Kensey and Young I Cho, PhD and the 2007 followup, The Origin of Atherosclerosis: What Really Initiates the Inflammatory Process.

Reference post: Sticky thick blood - risk of stroke or MI [www.afibbers.org]
September 2012

I certainly agree with you about Dr. Natale.

Best to you,
Jackie
Re: Xarelto side effects
January 19, 2016 01:13AM
It would be nice if the medical profession did include some of this stuff.
Just finding a doctor who can properly diagnose you seems to be a feat, let a long getting into any of this.

My Grandfather on my Mothers side tended to be a "bleeder". He needed Vitamin K after surgery to help him clot. My Mother had arrhythmia starting at 30. She functioned fine, was never on blood thinners, and past away at 78 from lung issues cause by damage from an un-diagnosed infection that was never treated. (Dr. Error)

Not scientific but before starting a blood thinner, my blood looked like water when I would cut myself. I have wondered if some arrhythmia ran in my mother's side of the family and the blood tended to be thinner and slow to clot and though natural selection the thin blood people lived and the normal blood people died off. Like I said not scientific, but interesting to speculate about.

Don
Re: Xarelto side effects
January 29, 2016 12:10AM
Im no expert but if im looking at long term blood thinner i eould opt for the warfarin despite the extra monitoring. My dad was on earfarin when he had o serious accident. They reversed the warfarin INR in 20 minutes. Saved his life. Had he been on one of the others he would not have survived. Add to this the class action suits currently underway and the choice becomed clear. To me anyway.

Murray L

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Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.
Re: Xarelto side effects
January 29, 2016 05:26AM
Quote

They reversed the warfarin INR in 20 minutes. Saved his life. Had he been on one of the others he would not have survived.

Actually... there's a Nov 1, 2015 youtube video from the stopafib conference where none other than Dr. Natale (in the Q/A section at the end of the 120 minute talk) explains that there actually is a fast-acting reversal agent for the NOAC's. Start listening at 1:47:00, where Dr. Natale answer's a patient's question about lack of reversal agents for the NOAC's. This URL is a direct link to the 1:47:00 mark [youtu.be] Dr. Natale then goes on to point out that he does ablations on uninterrupted NOAC's, and he would not do that... if there were no reversal agent for the NOAC's.

So, you may want to reconsider the decision to stick with warfarin rather than switching to a NOAC.
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