I don’t think I have had AFib since a two week episode in December/January. Once I had a short episode of 30 seconds a few months ago. I’m fairly sure I’m not having any AFib episodes in my sleep. I’m awaiting results of a three day ECG from two months ago.
I want to come off Apixaban. Any advice on how to do this safely?
I understand coming off any blood thinner increases risk of stroke. But is that in everyone or in people with conditions likely to cause strokes?
I have not had any difference in bleeding while on Apixaban. Not sure how to understand that.
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FiveMilesSouth
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We cannot advise you - this is something you need to go to your original prescribing doctor for a consultation on the advisability of stopping anticoagulants. Just because you haven’t noticed an AF episode for a few months does not lessen the risk of stroke. Neither does it mean you aren’t experiencing AF episodes, that will only be proved from continuous monitoring. I know my EP would only consider me stopping Apixaban after he was convinced I hadn’t experienced any AF for 12 months following an ablation and as soon as I reached 65 - he wanted me back on them.
My understanding is that the risk of stroke does not diminish just because the AF is not noticeable but it will depend upon a number of factors so please go to your doctor for advice,
As anticoagulants don’t actually thin your blood you shouldn’t notice much difference in stopping bleeding from cuts - I find it takes a little longer but not that much difference. Anticoagulants slow the clotting process down so blood takes longer to clot but does not affect the viscosity of the blood.
As a matter of interest - why do you want to stop them?
Thank you for such a considered response. I thought that one only has to take Apixaban while there is a risk of blood pooling during AF episodes. Thanks for explaining how Apixaban works. There is a lot of emphasis on bleeding more if cut in the guidance. I think I am 63. Score 1 for female.
I think I just wanted to take less meds and not have to stress about the danger of missing a dose. I have never missed a dose but despite my phone alarm being set to go off at 12 hour intervals I am on occasions one or two hours early or late taking the pill. And I do have to eat with it or it hurts my stomach. But that’s getting manageable.
I realise as I am writing this that my reasons for wanting to come off it sound a bit feeble. On balance my heart does feel a bit more weak even though I don’t get AF episodes I feel I could. That’s not a psychological worry it’s something that was around before my AF episode in December.
I feel more open to opinions here than a rushed hospital doctor telling me to take it and that I’d take it for life. I felt angry. Like I was doomed. He also said it will come back more often and eventually not go away. That shocked me and I don’t believe that has to be the case after speaking with a few people who had AF and are fine now.
It’s SO unpredictable and personal experiences vary. Some find they have a few episodes, make some lifestyle changes & seem to suffer no more whilst others go through extensive treatments & continue to have AF. My journey - diagnosed 2007 but probably had episodes for several years previously; drugs 2007-2014 with diminishing efficacy & general health determination; 2013 & 2014 ablations, 1st made things worse whilst 2nd eliminated AF for 3 years but when returned it wasn’t nearly as disabling. Sept 2018 - Pacemaker insertion - which is probably the most helpful thing I did as I have had 2 minor episodes since - although PM is not recommended treatment for AF.
Throughout my aim was to come off all meds and I fought every attempt to reintroduce them - until I had a mild TIA although not experiencing AF at the time. I tell you - I couldn’t get back on A/Cs quick enough! Now 68 I am comfortable with taking them but take no other heart meds.
Thank you, CDreamer. I really appreciate you sharing your experiences. I feel a bit stronger and getting more prepared. I haven’t been aware of feeling weak spirited but reading these posts helps boost my sense of becoming more prepared for whatever comes along next. Hard to explain. But thank you.
Regardless of whether or not you think you have experienced AF, if you score 1 or more on CHADsVASc you would be well advised to remain on anticoagulants for life. We are not medically trained but the vast majority of those who are, say that once you have been diagnosed with AF, the risk of stroke remains regardless of any treatment you may have. Your decision of course, but having worked with stroke patients to me it is a not a risk worth taking.......
Thank you for taking the time to help me think this through. I’m hearing the medical logic a bit differently. I can feel myself rethinking my decision.
Hi Buffafly, my problem is three fold. One to do with fear of bleeding and two to do with the need to eat and three to do with anxiety about getting the timing right. But I don’t want to change the medication if I am going to stay on it.
I have very poor sleep and have been prioritising getting that sorted out to minimise AF recurring. So I was having to wake at 7.30am to eat a sandwich which I made the night before is sometimes upsetting when I may have only just got back to sleep. In the evening, I have to eat earlier because of a hiatus hernia and need to avoid reflux over night. So I need to add in some food in the evening too. I have changed the timings to 08.30am and 8pm. And that seems to be working.
I wonder what views there are on exact timing if taking Apixaban 12 hours apart?
I take mine after breakfast which could be between 8-9.30am & in the evening before bed - usually between 10-11pm. I don’t worry if I miss a dose - better to do that than take too many but I only miss once in a blue moon. You will have some cover for more than 12 hours & as long as you don’t take 2 doses within 9-10 hours I really don’t worry.
I had a sleep test & now take CPAP - that & PM & addressing my anxieties did more for improving my general health than anything. I now sleep though 5-7 hours in good qualit y sleep - makes all the difference!
There is no need to take food with Apixaban. Riveroxaban and others but not Apixaban. My husband also has a hiatus hernia and has to eat regularly, but not because of the anti-coagulant. I understand the reason for 12 hours apart is for the efficiency of the drug. Good luck. Please don't worry about the bleeding, it is not a blood thinner, it is an anti-coagulant. Also Apixaban is supposed to be kinder to the stomach and the brain than the others so I have been told
As we often say we are not medically trained so it’s always best to speak to your pharmacist or doctor but from what I understand, the 12 hours is not absolutely critical. I do a lot of travelling and there have been a good few times when I have been an hour or more late and after 3 years I’m still here!
Try not to worry about the bleeding issue......it is said that Apixaban and the other DOAC’s are marginally better than Warfarin when it comes to spontaneous bleeds but if you have a history of internal bleeding then you need to be more cautious. DOAC’s are significantly easier to take than Warfarin in terms of having to be careful about what you eat. Strokes are a very different matter, they can be life changing and cause significant problems for both you and those who would need to look after you.....
Hi Flapjack, yes I think I am starting to understand the risk of stroke more clearly. I don’t think I am at any increased risk of internal bleeding. I’m avoiding ibuprofen and aspirin. I take Apixaban with food as it does make my stomach hurt slightly. I think I am slowly relaxing about the bleeding because it doesn’t seem to be affecting me.
I looked into the differences between Rivaroxaban and Apixaban before going onto them. I think I asked for Apixaban as it is apparently gentler in the stomach. It has been much harder as it is twice a day but that’s getting easier as I get less anxious and have a system in place with day pill boxes for am and pm.
I had to bite the bullet of Apixaban in March. I have only had ( as far as I know) 5 episodes of afib since 2015 . It is now 11 months since the last. But in March I had a mild TIA . I hate taking it and the Nebivolol but it's better than the episodes of afib and having a stroke. I am lucky that I don't have any other meds apart from thyroxine and HRT . I do not consider these as meds but hormones that replace what my body no longer makes in sufficient quantity.
Thanks for sharing your story and experiences. It’s a gift for people to share all this learning with people like me. Really helpful. Hoping you are continuing in good health.
Looking back on these posts I realise how much my attitude has changed in nine months.
I have been taking Apixaban twice a day between 8 and 9. I use alarms on my phone to remind me. I take Lanzoprazole at least half an hour before the Apixaban and take the Apixaban with food to protect my stomach which aches if I have not had enough food with it.
I understand that whether I have active AFib or not, people who have had AFib are at increased risk of a stroke. So I take it. I don’t have side effects. I’m no longer worried about bleeding from injuries. When I have had minor injuries, the bleeding stops fairly quickly. I carry an Eliqilis user card everywhere.
I’m in a routine. No worries about anything to do with meds or anything. But I can see how much talking through things I needed to do to get to that place. This forum really helped me. People taking my worries and questions seriously by giving such considered responses was brilliant. I can see now that I needed to hear different kinds of responses and the same things put in different ways.
Now that I’m having my second ever prolonged episode of AFib I can see how far I have come emotionally and informationally. So I am dealing with this episode very differently.
So thanks all for your responses and questions. This is a really valuable resource.
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