Eliquis and AFib

[jlmnlm]

How does one stop taking Apixaban?

[BobD Volunteer]

Why would you want to ? It is helping stop you having a stroke!

[jlmnlm in reply to BobD]

My friend died last month from a brain bleed after hitting his head. He was on Eliquis.

[Gumbie_Cat in reply to jlmnlm]

It’s always a balance with anticoagulation, though I have decided that on balance I’m safer with my Eliquis.One of my sisters had an ischaemic stroke about 13 years ago. She was on warfarin for many years. Had a fall downstairs early last year, cut her head open - but was ok. However her warfarin levels started going haywire, not sure what happened there, and she was put on apixaban.

She wasn’t doing well anyway, and taking falls - resulting in another trip to hospital where a scan revealed a micro-bleed on the brain. No idea if that had been caused by the previous warfarin with a much too high INR at one point, or the newer apixaban.

Anyway, I think she stopped the anticoagulants - whether on advice or not, I don’t know. (All a bit difficult to ascertain over the phone.)

A couple of weeks later she had a massive stroke, which was found too late, and sadly died within a few weeks.

[jlmnlm in reply to Gumbie_Cat]

I’m very sorry for your loss.

[Gumbie_Cat in reply to jlmnlm]

I’m so sorry about your friend too. Such a shock when something is sudden.

[Vrouse in reply to jlmnlm]

I believe the chances of having a stroke are far greater than hitting your head and causing a bleed. I had a stroke caused by AF and have been on Apixaban ever since.

[jlmnlm in reply to Vrouse]

I’m glad you survived. Do you have any side effects from Apixaban?

[Vrouse in reply to jlmnlm]

None at all, just the relief that my chances of having another stroke are greatly reduced. I hope, when you take everything into consideration, you will decide what is best for you.

[wilsond]

You should not stop taking it!!!

[Hidden]

Good Morning. It is very important not to make any changes to dosage or frequency of medication without consulting your GP or Consultant. Please take a look at our info sheet on Apixaban heartrhythmalliance.org/afa... . If you have any questions or concerns please feel free to contact our Patient Services Team who will be happy to talk things through with you [e-mail]

Apixaban info sheet

[jlmnlm in reply to Hidden]

Thank you.

[mjames1]

It's important you have your doctors onboard before stopping any NOAC (thinner) like Apixaban. That said, I've been on and off thinners over the years and when I stop, I just stop. Never been told to wean off like for example with beta blockers. But again, the entire discussion of thinners, whether you should take them or not, and how you should stop if decided, should be made with your doctor.

Jim

[jlmnlm in reply to mjames1]

Thanks for your input James.

[secondtry]

If the decision is made, I personally would explain this to my trusted medic first in case they have some connected advice, then assuming nothing there changes my mind, I would just stop but make sure in the following two weeks at least that I take all Lifestyle action I can to lessen a possible clot over the transition period as my blood gets used to the absence of the AC eg stay active no long sedentary car/train/plane journeys or similar, extra liquid & other supplements/diet changes.

Most will disagree with stopping but in reality no-one can say categorically that is the wrong decision. If your friend had posted the exact same question, he would get the same replies and yet it appears it was not the right decision for him....but of course of course he might have had a terminal bleed without ACs.

[jlmnlm in reply to secondtry]

I tend to agree with your thinking. Thanks for the reply.

[riffjack846]

You don't.

[Ppiman]

You should stop only with specialist advice and never on your own volition. It's terrible what happened to your friend, - how awful is that? It's so sad for you, too. My friend has fallen twice and been rushed in for a scan but was fine both times.

Keep in mind that before the widespread use of anticoagulants for people with arrhythmias, far more people were forced to suffer with the results of a stroke brought on by the AF. Your friend might have had a bleed even without his Eliquis, I suppose, too. There was a sad post on a FB forum for AF yesterday from the son of a man who after 40 years of AF without any anticoagulation suffered blood clots in his lungs and legs. He was immediately anticoagulated and with luck will be okay.

Steve

[jlmnlm in reply to Ppiman]

Lots to consider, for sure. Thank you.

[Tryfan]

When I've given my view on Apixaban. Whether it's over side effects, or any other issues. My answer has been, I've no known side effects, it prevents a possible life changing event- stroke, just carry on taking and try to avoid deep cuts and head injuries.The latter is the main reason you should always carry your " I'm taking Apixaban card".

I'm sorry you lost your friend. But I wouldn't stop. Just be careful and carry your card.

[jlmnlm in reply to Tryfan]

Thanks for your reply. I have two cardiologists within the same physician group. One oversees my care and one is a specialist in AF. Neither one mentioned carrying a card or wearing a bracelet. I happened to think I should have some I.D. , so I just wrote it on a piece of paper and placed it with my driver’s license in my wallet. This concerns me that physicians did not think of this nor did the pharmacy/chemist. Secondly, I contacted my cardiologist office with concerns about muscle and joint pain that began soon after I started taking Eliquis/epixaban and metoprolol. His nurse dismissed my concerns saying those are not known side effects. I assured her they were and that I had already spoken to my chemist. She persisted the problem could be caused by something else. I insisted she advise the doctor. That was a Monday. Friday rolled around and still no word. I phoned again, talked to two different nurses to find out the doctor had simply switched me to Xarelto (rivaroxaban) but did not discuss that with me beforehand and no one had returned my call. I worry about what appears to be nonchalance by medical staff with whom I am expected to trust with my health. Sorry to rant.

[Buffafly in reply to jlmnlm]

My Apixaban (Eliquis) comes with a card to put in your wallet etc in every box. Doesn’t yours?

[Tryfan in reply to jlmnlm]

I know it's the industrialisation or commercialisation of medicine. I feel we are seen as cost and profit units. Once you move into a cost unit by dint of age or onset of an illness. Then require more time, drugs etc ( like receiving answer's to questions of concern) than a profit unit. You are made to feel it, your becoming a nuisance and a cost.Nowadays, I consult a pharmacist or read technical reports or even consult Dr Google et-al. I want to know what if anything is wrong with me before I have a consultation so I don't get fobbed off.

Good luck going forward.

[kayberry in reply to jlmnlm]

I agree 100% that apixaban causes terrible joint/muscle pains as well as arthritis which started shortly after starting Eliquis. Never had a pain before starting it. I am planning a Watchman procedure this month so I can stop Eliquis and hopefully get rid of the anti coagulant and get back to feeling well. Will keep you posted how this turns out.

[jlmnlm in reply to kayberry]

I wish you well on your upcoming procedure, I have a friend who had success with the Watchman. Thanks for sharing your experience with the drug.

[Buffafly]

Did he go to A&E? I’ve had two hard bangs on the head and went straight to hospital, luckily neither resulted in brain bleed. There are also obvious symptoms of a brain bleed which would alert you to a problem. And a rare event like a burst brain aneurysm would be catastrophic regardless of anticoagulation.

I can understand your reaction but I hope you think very carefully about your decision ❤️‍🩹

[jlmnlm in reply to Buffafly]

Yes, he was taken by ambulance to the hospital and he died a few days later. Thanks for taking the time to reply and I will consider your advice.

[Ducky2003]

Sorry for your loss but you really need to chat with your GP before stopping medication.I would imagine your stroke risk will be a lot higher than the chance that you may bump your head and get a bleed.

It's like saying, a loved one died in a car accident so I'm not going to get in a car again.

Please don't stop it without getting professional advice.

[jlmnlm in reply to Ducky2003]

Thank you for your input.

[RoyMacDonald]

My Father died of a bleed but he was not on Apixaban. I take Apixaban as I prefer the risk of a bleed, as statistics show it's a much smaller risk than that of having a stroke. Your choice though. You might have a stroke and forget all about your friend of course. There is no way of knowing how much brain you will lose if you have a stroke.

All the best.

Roy

[jlmnlm in reply to RoyMacDonald]

Thanks Roy. Can I find those statistics online?

[RoyMacDonald in reply to jlmnlm]

Yes.

All the best.

Roy

[Bagrat]

Before I started Warfarin ( now on apixaban) my GP in front of a trainee, regaled me with a tale about an MP, who the trainee was too young to remember, who died of a brain bleed on steps of 10 Downing St. This did not put me off.Both my adopted parents died years after a series of debilitating strokes.

What I'm rambling on about is that regardless of statistics, our decisions are formed as a result of life experiences and personally I'd rather risk a brain bleed ( I'm good at falling like a stone).

You are entitled to feel differently.

[jlmnlm in reply to Bagrat]

It does come down to personal choice after looking at the risks. Life is a gamble no matter what. Thanks for your reply.

[seasicksurf]

Not sure where you are on your AF journey and plans for future treatment, but after having an ablation I was taken off anticoagulants after the blanking period was completed (90 days post ablation). I too had the side effects and concerns about bleeding. Was glad to finish that drug.

[jeff1257]

Statistics are meaningless in a universe of one.

[Bagrat in reply to jeff1257]

Thank you for putting what I frequently say so succinctly. I am not good at short and pithy but always say statistics only help managers and policy makers choose how best to prepare but because of the way statistics are worked out none of us know where we sit on a bell curve.

[Buffafly in reply to Bagrat]

However, I do think that carefully reading stats and comments in the NHS AF decision chart might save a lot of disappointment. It is human nature to expect we will be the lucky one - or not, if we tend to pessimism.

[Bagrat in reply to Buffafly]

Agree all the way, especially as Health Care professionals are equally open to the bias life experience brings!

[RoyMacDonald]

Try this link for an explanation from a professional Cardiologist of a study. It's a lot pleasanter than wading through a report. He gives a link to the report if you really want it. youtube.com/watch?v=Ze8ZC5_...(Not working as expected?)

All the best.

Roy