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Anyone tried PIP Apixiban, post-ablation?

KootenayTrails profile image
14 Replies

Hello I am now almost 5 months post-ablation and doing well with no AF/flutters since, and have resumed moderate trail running, cycling etc feeling great. I was taken off all medications except apixiban. I had assumed I would take it for life, but a week ago had to stop it completely due to worsening intolerable rash on arms, legs and trunk. Though it feels wonderful to be on no meds at all, am a bit nervous being off anticoagulants completely, despite low CHAD-Vasc score. Anyone using PIP anticoagulants ie if AF reoccurs or BP increases?

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KootenayTrails profile image
KootenayTrails
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14 Replies

This is something you need to discuss with your Doctor, it’s not a recognised form of treatment here in the UK. I suggest you pursue your true stroke versus bleed risk with your EP.

Here, a score of 1 means that anticoagulants are not necessarily required but if it’s something the patient wants to do, most EP’s would support that decision. It has to be weighed up against the patient’s bleeding risk which, depending on life style activities, could be higher than you stroke risk. With a score of 2, they are normally advised because the risk levels start to shift depending on the patient. At 3 and above they are definitely recommended. Medics openly admit that it’s not a precise science but the general tendency for most people is to take them and be careful! There are other anticoagulants which, we are told, are as effective as Apixaban although Apixaban is generally well tolerated, but trying a different one might be worthwhile. There are trials going on in the US regarding taking anticoagulants as a PiP but they will take more than 5 years to complete.

Hope that’s helpful, I’m sure others will help too…..

BobD profile image
BobDVolunteer

A bit too risky for me. There is a trial in US regarding PIP anticoagulation but a long long way from any meaningful results.

Remember that ablation does not remove stroke risk BUT if you were only anticoagaulated for the purpose of the ablation and recovery (i e Chadsvasc risk 1 or lower) then anticoagulation is optional at best.

CDreamer profile image
CDreamer

Yes - did exactly that with the very reluctant OK from EP who did looked at a lot of the research going on in US at the time. I had no episodes of AF - but had a TIA about 9 months later anyway. I was 62 at the time and scored 0 for other risk factors. I wouldn't chance it - just my opinion.

mjames1 profile image
mjames1

Yes, several of us, including myself from the US and some from the UK as well. I was going to refer you to a past thread on that, but unfortunately, a number of posts on this topic have been deleted by administration because some here have complained because they felt that some members need to be shielded from alternative points of view.

For more information, you might google "Dr. Rod Passman PIP thinners". He authored a couple of promising pilot studies that formed the basis for a multi-center trial, in conjunction with Apple Watch which is now enrolling in the US.

But specific to your case, several months ago, you stated your CHADS risk score was zero. You do understand that with a score of zero -- possibly even "1" -- the risk of taking thinners, in general, outweighs the benefits?

As I've stated in the past, no one here should be telling you to take or not to take thinners. That's a decision between you and a trusted doctor who has your complete medical history.

Please do your own independent research beyond the opinions here, including mine and bring that to the table when you speak to your doctor.

Jim

KootenayTrails profile image
KootenayTrails

Thanks for the replies, very helpful to hear others’ opinions. My EP Team originally said apixiban for life even though my Chad2vasc is 1 ( because I’ve turned 65). This is because I have a strong family history of Hypertension (both parents and four siblings) even though I do not yet have, and I have HCM. They are reluctant to endorse PIP Apixiban because the US study is not yet finished, though agree I can’t tolerate anticoagulants. My GP won’t comment. So basically up to me. Just watched Dr Passman’s video on PIP Apixiban, thank you Jim. I’m heading to Mexico tomorrow … with Apixiban which I’ll take for a month only if AF returns even for an hour, or if my BP readings >140/90 (usual is 117/70); Apple watch always. Long term goals continue my healthy weight with regular exercise, clean eating, no large meals, no late meals, no alcohol or caffeine. I have come to realize that I am high on life anyways lol so the restrictions have just not been an issue. Thanks again!

mjames1 profile image
mjames1 in reply toKootenayTrails

I'm glad you found the video useful. Actually, Dr. Passman doesn't believe clots can form in an hour, but arrived at that protocol, because he does not require everyone in the trial to wear the watch at night. So, in some circumstances, the one hour of a fib in actuality would be nine or 10 hours, which he permits. He explained this and answer to a recent question on Twitter, but before I suspected the same based on the trial inclusion criteria, which only required the watch to be worn 14 hours a day, which meant in theory one cld be in afib for 10 hours before being required to start the 30 day course of thinners.

Jim

Ppiman profile image
Ppiman

I’ve read that the stroke risk from AF is related also to the highly variable shape and size of a small part of the heart called the atrial appendage. How any of us could find out that information is, well, very unlikely!

I’d follow my doctor’s advice on this if I were you but I expect there can be no definitive answer or certainty.

Steve

KootenayTrails profile image
KootenayTrails in reply toPpiman

Yes who knows? And yes followed EP and Pharm to stop Apixiban due to intolerance. However they’re not allowed to promote PIP in Canada yet, just got the feeling they think it’s worth a try, rather than doing nothing

Ppiman profile image
Ppiman in reply toKootenayTrails

The problem is that there's some evidence I have read that suggested that the stroke risk might not be directly related to the AF itself, but to other factors in the "AF heart". I'm quite surprised at the lack of certainty and knowledge, but that just shows how complex the body is.

Steve

RoyMacDonald profile image
RoyMacDonald

At your age I'd take the Apixaban on a regular basis anway.

All the best.

Roy

KootenayTrails profile image
KootenayTrails in reply toRoyMacDonald

Yes as I said, was intending to life-long. Unfortunately can’t take the rash, and EP and Pharm agree needs to be stopped.

RoyMacDonald profile image
RoyMacDonald

Have they suggested an alternative to try? A stroke can be devastating even if it does not kill you.

All the best.

Roy

mjames1 profile image
mjames1 in reply toRoyMacDonald

"A stroke can be devastating even if it does not kill you."

----

And so can a major bleed. At CHADS 1, the risks -- including bleeds -- can outweigh the stroke prevention benefits per guidelines. Thinners are not a panacea, but a calculated choice only when benefits outweigh risks. Both is AP and pharmacist agree they do not in the OP's case.

Jim

Elli86 profile image
Elli86

You’re poking the hornets nest with this one 🤣 bound to be someone gets upset with this VERY reasonable question.

From what I’ve read many have used as pip and many have come off altogether. Including myself. My Chadvasc score is low however due to my age. Always best to be cautious for sure but it’s certainly not an impossibility by any means. Good luck 👍

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