Quick Question on Xarelto

Well-wishes to everyone! Haven't posted in a while.

A new friend informed me yesterday he was on Xarelto for leg clots. He mentioned that his doc had indicated that no anti-coagulation test was ever required.

Think we're all aware that regular monitoring is unnecessary with the NOACs. But I seem to recall a discussion here that over time (maybe yearly or so) some anti-coag blood work was advised.

I'm not talking about blood testing needed for other, non-anti-coag purposes, which I believe would be necessary in certain instances.

Anyway, I tried a forum search and found nothing. Also checked Google briefly, and got nowhere.

Am I "remembering" this wrong? (Not sure this question is grammatically correct, but I'm confident all my really smart afibber sisters / brothers here know exactly what I mean.)

Thank you for understanding me. ;>)

/L

Larry - Since Shannon attends so many conferences on treating arrhythmia, he's the one to respond about why testing either isn't done or not considered necessary because of the way these new anticoags function in the body.

I've never been told that I should have a periodic test, either. I'm presuming it's because these work well - consistently, which must have been proven during the trials before marketing.

It's unfortunate about your friend's leg clots. I just learned of an friend's husband who had a stroke and a heart attack at the same time....and miraculously, he's okay but undergoing lots of tests. Certainly obvious he had thick, sticky blood.

At least with afib, we are aware of the potential clot risk factor caused by multiple factors including inflammation and if not on formal Rx preventives, are at least aware of the need to correct hyperviscosity.

Jackie

J -- Thanks for the response.

Just think it'd be so prudent to do even a yearly check on the effectiveness of the med... both physiologically and from a liability perspective... never mind the peace of mind it would provide to the patient... knowing that, in fact, the appropriate level of anti-coagulation is actually being achieved.

Can only imagine a patient's reaction upon learning, after 18 months on the med, that the level is not therapeutic. Very scary and upsetting!

Interested to hear Shannon's views on this.

/L

There should always be a follow up test to make sure the medicine is working and nothing is getting out of hand. I had stage 4 lymphoma: chest and legs. I had leg clots. My doctor, Dr. Joseph Ye, Vista Oncology, made sure I had the necessary tests and timely.

I was diagnosed on July 5, 2016 with lymphoma stage 4. Dr. Ye sat down with me explained my situation and the treatment he wanted to use. Six Chemotherapy treatment sessions with six shot sessions. Within 4 months all was right. And again in February 2017 back up tests. And I continue to have scheduled tests. Lymphoma is the most recurring cancer. If you are free of it for at least two year the chances of recurring is very minimal. Best of luck.

That's great news, S! Keep it going.

BTW, forgot to share in my previous post that my friend's clots resulted from a botched hip replacement performed in SW Florida. Was very surprised to hear this, as I know many who have gone through this surgery here, and all rave about their procedure.

/L

Do you know of any where that sells xarelto very cheap? I am fearful of online pharmacies because of all the horror stories. Impossible to check on them because of all the opinions and stories. thanks.

I don't, S.
But do recall some recent posts by others here on how to obtain NOACs at more reasonable prices. A forum search should bear some fruit. In the event it doesn't, start a new thread with that as the topic.
Good luck!

/L

Hi Larry.

Short answer there are currently no recommended follow up tests for NOACs other than the standard kidney and/or liver panels (depending on which NOAC) to test periodically but only for those with known kidney or liver dysfunction. The usual remedy in the case of such a kidney impairment is a halving of the dose of said NOAC. If either the kidney or liver dysfunction is too severe then the person may be switched to warfarin if they can tolerate the vitamin K antagonists better.

But there is as yet no such test to determine the overall effectiveness ... as in INR with warfarin ... for the NOAC drugs. And while that was one of the promised benefits of NOACs as none of them work via the Vitamin K antagonist anticoagulation cascade arm and so do not require follow up testing.

There are still a lot of unknowns about the NOACs that only time will tell, but for the most part so far they have proven relatively easy to use by a significant majority of afibbers compared to warfarin at least.

There is a move to develop methods to determine what degree of anticoagulation one is at during an emergency injury or when an urgently required surgery pops up for those already own a NOAC where knowing this info could come in very handy indeed! But so far no such drugs are on the horizon from what I have heard in the many discussions on NOACs at the various EP and Cardiology conferences I have attended the last few years, including two weeks ago in Chicago at the large Heart Rhythm Society Scientific Sessions 2017 conference attended by approximately 14,000 EPs and Cardio's from around the world.

Many interesting discussions surrounding NOACs and particularly, as noted in the list of AFIB related article summaries Peggy posted in a recent thread, the very keen interest in the burgeoning research out of the respected Intermountain Medical Center EP group from Utah lead by Drs John Day, Jared Bunch and Pete Weiss, all very good EPs and who have taken advantage of the large rather homogeneous Mormon and Utah populations followed by this large center when structuring long term epidemiology trials to look at long term effects and impact on overall health from AFIB as well as from long term OAC use, or the lack there-of, in Afibbers.

Of major interest and importance is the ground breaking work by Intermountain that has been replicated in several other major centers in the US, Europe and Asia too, emphasizing once again that being in AFIB long term is itself a serious long term risk for impaired brain health.

The old mantra, especially in the days when there were no effective ways to restore durable NSR after years of AFIB, that for decades cardiologist preached is that if you are in AFIB it was not a big deal so long as you stayed on Warfarin and kept your heart rate low for the most part preferably under 100 bpm, and if so, there was little problem remaining in AFIB and just getting used to it!

Now we know this was poor advice all along as we understand that whether or not one is on OAC drugs, so long as folks are in AFIB too, there is a markedly increased risk for early onset cognitive dysfunction as well as early onset dementia and even full blown Alzheimers disease beginning well before age 70. After 70 years is typically when we begin to see the early phases of cognitive decline in those without an AFIB history.

However, we see clearly now that for those with an ongoing history of AFIB there is a serious risk for these terrible memory and identity robbing brain diseases to take hold well before 70 years old at a rate of occurrence significantly higher than in those 70 years and younger who never have had AFIB at all.

If that isn't a wake up call for Afibbers to make a serious effort to restore NSR for the long term, I don't know what is!! And taking an OAC, while helpful for stroke prevention for those with a 2 or higher stroke risk score, and while OAC may help to some degree in lessening the risk for early onset cognitive dysfunction to some degree in Afibbers, the early onset dementia/Alzheimer risk still remains significant for those suffering from ongoing poorly addressed AFIB!!

The issue isn't so much 'should you take an OAC or not when you have AFIB', but rather the growing emphasis now that jumps out at us all from this avalanche of new research over the last 8 to 10 years has re-focussed our priorities to get rid of AFIB once and for all ... and the sooner rather than too much later the better.

Shannon



Edited 2 time(s). Last edit at 05/27/2017 02:12AM by Shannon.

Thanks much for jumping in, S.

As more and more folks are prescribed NOACs -- and the promotion / marketing of these has been huge, the need for a way to assess anti-coag status becomes more and more significant... in both emergency and non-emergency settings.

In the emergency room, I guess the issue could be dealt with through blood transfusions... but this would divert greatly needed time / effort from the present and immediate root emergency.

In non-emergency situations, we would likely only discover a serious health crisis after-the-fact... a stroke, an embolism, kidney failure, DVT, etc. And these could affect truly much larger numbers of the population.

Think we'd really rather not learn that NOACs are not effective in the long term from the above experience. Direct testing is the way to go... and it sounds like the industry needs to devote greater resources to it.

Very concerning.

/L

Both my husband and I opted for Warfarin. It's the oldest anti-coagulant with effective antidotes to stop bleeding. Both our numbers are stable, where we require testing Six to eight weeks out. We also enjoy eating everything contrary to the hype you hear with NOACs. The only requirement is to be consistent with one's diet. Don't have a big salad once a month, but a salad several times a week.

Last month a young man in the next bed when my husband went in for valve surgery had internal bleeding and doctor's were flummoxed from where it was originating. He was on Xarelto.

Agree with ya, Catherine.

"Last month a young man in the next bed when my husband went in for valve surgery had internal bleeding and doctor's were flummoxed from where it was originating. He was on Xarelto."

And the above is another example of why we need a reliable way to check the anti-coag status of patients on NOACs.

/L

I have a second-hand experience with Xarelto, and frankly went looking for forums to tell the story. I was helping an older lady who was living in an assisted living/independent living facility and had no family. I took her to her appointments for maybe 8 or 9 months; she had been diagnosed with terminal cancer and also dealt with afib. She had apparently been on Xarelto long before I started taking her. I got her to the chemo treatments regularly, and it wasn't long before she needed a blood transfusion. Neither the cancer doctor nor the heart doctor knew why. This became a regular event over the months, having to have transfusions. When she passed away, she died with a mouthful of blood. I swear, it was inside a week after that when I saw for the first time the ads suing the company that makes that stuff. Now whether or not she was ever tested to see how the drug was working, I don't know. Her health was deteriorating rapidly anyway with the cancer coming back, but I blame Xarelto for the immediate cause of death. You'll never see that on a death certificate though!! The doctors were clueless, at least at the time. I urge anyone taking that stuff to beware. Ethel was a tough old bird but it was an FDA-approved drug that ultimately did her in.