Hello, I've recently been diagnosed with paroxysmal AF, which I can feel and occurs only occasionally. Even so, I have been advised to start Apixaban to reduce my risk of stroke. (Chadsvasc Score3) I am fearful of unintended side effects, especially a bleed on the brain, and wonder how other people cope with taking it? Thank you.
Apixaban worry: Hello, I've recently... - Atrial Fibrillati...
Apixaban worry
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Quivery
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BobDVolunteer
Simple, it is your best friend . With a Chadsvasc score of 3 your annual risk of stroke (acumulative by the way) is high. Your bleed risk is relatively low. The number or frequency of your AF events is irrelevant. Any diagnosis of AF increases stroke risk 500%.
Or to put it another way, you can always stop anticoagulants but you can't undo a stroke.
I’ve been on Apixaban now since about 2016. I stopped anticoagulants after ablation and 12 months without AF episode & CHADS score 1, then had a TIA so couldn’t get back on them fast enough.
Depends upon which you are more scared of - stroke or bleed. With a score of 3 - I wouldn’t hesitate to take them.
I have no noticeable affects from Apixaban - broken several bones, had surgery, had major cuts and no problems and absolutely no concerns & like Bob, I consider it my protection. I’m far more worried about stroke risk.
I also take it due to AF. I had a couple of small knocks to my head, banged rather than anything. I didn’t go to a&e as I felt it was too minor. Am I being too casual about it???
Any head injury when you are on a blood thinner means you should have a ct scan in a and e. It’s protocol on the ward I worked on.
When I started taking Apixaban in 2013 my cardiologist said it had the lowest risk of brain bleeds of those anticoagulants available at the time. Like you, I didn't like the thought of taking it but it is now an essential part of my life. My CHADs score is now 3 also.
I found I became more careful when using sharp objects - not a bad thing as I aged - and that small injuries take slightly longer to stop bleeding. Otherwise, life goes on normally.
Best wishes - you'll be fine and certainly better than the stroke we can have.
Hi I go in and out of AFIB very frequently. I take warfrin for my AFIB. I find because warfrin is monitored on a regular basis it takes my anxiety away. Other anticoagulants have been mentioned to me but I feel safer been on the Warfrin, and my cardiology team are very happy with that xx
Thank you Buddy, all the best.
• in reply toQuivery
Hiya Quivery,
I endorse what Buddy says. Fortunately my AF is highly controlled but even so I don't trust the mongrel thing. I still get say, 3 to 5 times a year short bursts of it 2 to 15 hours duration, all depends on what it feels like doing and I totally trust my dear old friend Warfarin to keep me safe. I am able to, and do, with the support of my surgery self test at home and take my device with me all over the world when I travel. So I lead a totally normal life. Trust the drug .... never ... ever ... trust AF.
John
Quivery• in reply to
Thank you John. Travel is a concern now, even in the UK, so your words are reassuring to me.
Thank you
Hey Quivers…I’ve been taking anticoagulants since AF diagnosis In 2014. Changed from Warfarin to Apixaban, because of suspicions about possible causation of leg discolouration and Oedema. Over recent months my leg appearance is much much better. Convinced that Warfarin was a factor but who knows.
Thank you, another encouragement to read that you've had AF for 8 years, and ACs have, I presume, helped you to avoid a stroke. I'm pleased to hear your leg has improved so much too.
It’s quite natural for folk to be anxious when prescribed anticoagulants but once you get used to it, it’s not generally a problem. I’m not medically trained but I have taken Apixaban for around 6 years and I can honestly say it hasn’t presented me with any problems. Because they are commonly referred to as blood thinners, not surprisingly many think they thin the blood and believe that they are therefore at risk of spontaneous bleeding. As I understand it, this is not the case. Anticoagulants do not in themselves cause bleeds but because they contain anti-clotting agents, if any form of trauma causes a bleed then it can take a bit longer to stem the bleed. There is a HASBLED score which is similar to the CHADS2VASC score which is used to assess an individual’s risk of bleeding and the general thinking is that unless you have a close family member who has experienced a chronic internal bleed, if you have AF your risk of stroke is significantly higher than the risk of an internal bleed.
I find that whilst I’m more careful when doing things around the house, normal cuts and scrapes etc are almost no different than they were before taking Apixaban. For folk engaged in contact sports, motor racing, horse riding and the like, the risk of a fall or accident is potential quite serious so if this applies to you then you may want to rethink your activities.
It will be interesting to hear what others say but generally the fear of bleeding is far greater than the reality and as confidence grows, people tend to carry on as normal. I’ve added a link which will provide you with a lot of information about taking Apixaban, dealing with dental work, surgery etc etc but it is important that you have regular blood tests to check your kidney function as this is the means by which excess chemicals leave the body….
cks.nice.org.uk/topics/anti...
Hope this helps you to realise how important anticoagulation is in managing the risks associated with AF……
Quivery• in reply to
Thank you FlapJack for your full and helpful reply, relating your own experience, also for the up-to-date NICE link which is very useful too. They even mention the recent reversal agent Ondexxya available in an emergency which I had already saved to my phone, because it doesn't yet appear to be widely known in the medical community.
Fear of uncontrolled nose bleeds, eye problems such as retinal tears/detachment or brain haemorrhage from a previously undiagnosed vascular condition are my main concerns - I know this may sound neurotic, but I do have a nursing background and we are probably the worst, having seen so much during a long career!
This has given me much food for thought and will help me to come to a decision soon.
Morning Quivery, I was prescribed Warfarin in 2014. Ok for a few years but latterly couldn’t keep in range. Also found it hard to cope with restrictions on what I could and couldn’t eat and fear of INR rising and causing bleed. I was then prescribed Apixiban in 2020. I did think my hair got thinner but in fact it’s fine so no worries there. I am very strict about taking Apixiban as my father had a stroke so I will do anything to protect myself. Keep well
I’ve been on Apixaban for about 8 years and no problems whatsoever. Have to admit for the first week or so I didn’t use any sharp object, knife scissors etc as I was scared of bleeding copiously etc, even with just a little nick. Soon got over that and didn’t give it another thought. Any cut (for me) just takes a tad longer to stop. x
Thank you Frances, it seems we all have that concern, especially at first. I'm glad you've found it suits you.
Hi, I understand your concerns. I have had AF for nearly 7 years and only recently turned 65 and just started on anticoagulants. I wasn't looking forward to it. I have been OK so far so try not to worry. All the best.
I've been taking it for several years, and never had any side effects.
I’ve been taking it for a couple years and no problems and feel safer on than off it. No problems with excessive bleeding either and have learnt to manage it when having procedures (skin cancer removal for example) dentist and following a fall resulting in a head injury requiring an overnight stay in hospital. It’s routine now
Thank you Lucy, it must have been scary having a head injury - just what you don't need when on anticoagulants. Also I was pleased to hear that a dental visit was fine.
Yes it doesn’t cause any problems the health professional just tells me when to stop taking them and when to start again and I’ve had no problems. Usually stop 24-48 hrs before and restart same day or 48 hrs following my head injury (just had a larger bump on my head than expected). Never had a problem with any excessive bleeding following minor surgery.
When you read the notes on Apixaban, it is very scary! I remember reading them in hospital shortly after my stroke (ischaemic or blood clot from AF) and being very frightened I was going to bleed everywhere... especially in the brain. Stop worrying! The threat you face is from blood clots destroying parts of your brain due to AF, and Apixaban is a far better alternative than all the other anti coagulants. I was on aspirin for all the good it did me! While I bled rather too much initially (from two years ago) from teeth, anus and little cuts and so on, your system adjusts to this. Much of my anxiety came from post stroke head aches and giddiness as I always feared this was some indication of bleeding in the brain.... but that was nonsense... You are in no more danger with Apixaban than in a drug free environment as long as you avoid contact sports, being bashed on the head, or falling downstairs.. Just lead a rather more careful life style to avoid accidents
Took 3 years before I was put on axiban I had no a problem, I made charousis with red wine ,got a bit sozled! Don’t think you supposed to drink achahol don’t like it most of The time.
Interesting observation. I have tried to have the odd drink or two since my stroke and always found it made me feel awful now and totally giddy and knocked out. I'd put that down to one of my other medications for anxiety etc but it sounds like it could be one effect of Apixaban. I don't miss alcohol at all now though after two years. And alcohol is a known trigger for AF.
Thank you Oscar for your advice. The literature is indeed very scary! I'm so sorry to hear you had a stroke and hope you managed to make a good recovery.
Thanks for the kind good wishes, but why it is so important to take Apixaban is that strokes are VERY awful things and the effects long lasting, even if you don't have serious paralysis or something similar. DO make sure you take your anticoagulant as I would not wish the effects of a stroke on my worst enemy! 
Thanks for your good advice.
I take Apixaban too and would rather this than a stroke any day, but I remember being very leery about starting to take it. Don't worry, and carry on. Best wishes.
I had a stroke in December 2019, it was thrombolised and I've not suffered any after effects. I was put on Edoxaban in hospital. Subsequently discovered I have AF. I've had no issues at all with this med. I had two tooth extractions last year with no appreciable bleeding. Had a full blood test yesterday, not a mark! Hope you will be reassured by the comments.
Been taking it over a year with no problems, I dint find cuts take any longer to stop bleeding, I always carry the card with me just in case of accidents .
You are not alone. Consider it as the ultimate safety net or seat belt. You may not have a car accident but wearing a seat belt just in case is considered normal. You may not have another attack: you may. You may not have a stroke if you do have an attack: you may. What however is not in doubt are the consequences of a stroke if you do.It was spelt out to me when I decided to stop taking Apixaban. It's your life, your future, your choice. I decided to continue with Apixaban. As and this is the real message most people do not have any side effects all. Just be a bit more careful to avoid internal bleeds especially avoid head knocks.
I'm new to Apixaban... developed AFib just over a year ago, 9½ years after a major heart attack which required my being on an antiplatelet medication, Prasugrel (Effient). I would bleed like a stuck pig on that medication.
I once nicked the mucosal lining of my nose and I thought it was never going to stop bleeding... eventually ended up with huge stringers of clotted blood (sorry for the graphic detail.) The only med I was happier to be taken off of was my amiodarone. Apixaban is a walk in the park compared to Prasugrel... yes, I do bleed a little easier than without Apixaban, but a moment or two of pressure stops my bleeds unlike Prasugrel.
So far, I've only had one 20-min AFib event that I know of since my cardioäblation 8 months ago... given that I often don't have sensible AFib symptoms and my cardioäblation likely hasn't cured my AFib, I'm not willing to risk going off the stuff... the inconvenience is modest-to-nil and the consequences of having a clot form in my atria were I to not take Apixaban makes my decision to take it a no-brainer (no pun intended... who am I kidding here... of course I'm going for that shameless pun!)
Good luck in your choice and treatment!
Thank you Prinz, I'm getting the same message so far from everyone - go for it! These posts are helping to quell my fears.
I'm on the lowest dose. I had a bit of a reaction at first, but I don't know if it was the med or the afib, and couldn't see a doctor about it although I tried. Whichever it was it settled down. The only bleeding issue I had was after a wisdom tooth extraction, the dentist didn't think it necessary to stop taking it, but the bleeding wouldn't stop - up all night with it etc. But that might have happened anyway.
Hi, I also have been taking Apixaban for a number of years. Small cuts do take longer to stop but otherwise no problems. I carry the warning card in my wallet and also have a medical alert bangle which I put on when out and about just in case of a serious accident in the car or elsewhere.
I was scared at first but I’ve been fine on it. Even had three falls which I recovered from ok. Don’t risk a stroke! Good luck
Far more likely to have a catastrophic stroke with AF and a score of 3. Now you will be well protected. It doesn't matter how often or for how long you may have an AF episode,just need to be unlucky once and there you go .a stroke with it's often devastating or fatal consequences. Bleeds can be treated and are very rare anyway
Hope you are reassured by this. Many people on here had to persuade their medics to prescribe anticoagulation!
By the way they are Not Blood thinners! Anyone who tells you that is wrong.
Best wishes
Been on Apixaban for the last 4 years with no problems whatsoever! Rather be safe than sorry!!
Thank you Diana, that's reassuring.
Hi, been in AF for 25 years now. Had a slight pain in chest so they sent me for a Heart Scan.
Doctor told me there was sign of a small clot forming in the ear of my heart so they put me on Apixiban. She said I would automatically be put on a blood thinner at 65 anyway.
The pain in my chest has gone and I feel fine now.One small thing that happened to me about 2 weeks ago. I had been sneezing a lot and burst a small blood vessel in the white of my eye. My whole eye went red so I got it checked out at A&E they said it looked worse because I was on Apixiban and it should clear in a couple of days which it did. I also had a blood test last week and it came back normal. You should have no worries about Apixiban I have been told by a number of Doctors it's a very good drug.
Thank you Wswsh for sharing your experience and what good luck to detect the clot in your atrium before it dislodged. Thank you too for the eye haemorrhage advice - it does look scary! You've been very reassuring thanks.
Hey Quivers…Just a bit of a follow up from me. Forgot to mention that after a few weeks of changing from Warfarin to Apixaban, I was getting very very frequent episodes of migraine (AURA). That resolved itself after a while. Don’t know if any other sufferers out there had that experience. ‼️‼️‼️
That sounds awful Tickerprobs, migraines are so horrible. I wonder if others have experienced this problem? I'm glad they resolved.
Optical migraines are a different beast than migraine headaches. I had a couple of episodes of optical/aura migraines following my cardioäblation. 'They' say they were triggered by the puncturing of the atrial septum to get to my left-atrium from my right. The EP seemed unaware of such a condition and was blasé about my report.
Once I was 'reässured' of their benignness, they were actually quite amusing for me... think optical-floaters in your eye except they are translucent, rainbow-iridescent, and in the dazzle pattern they used on WWI naval ships. They disappeared within a week of the ablation and never caused me any discomfort or inconvenience
I realise the risk posed by having a stroke and the devastating consequence of a stroke and what that can leave you with I personally feel a lot happier on itKnow that any falls or bang to the head should be checked out and talk your fears over with your medics but I personally feel I’m under the best protection from AF risks especially as I’m too young to live with the consequence of not being on it - hope this helps
Yes Afibflipper, you are so right. Sadly my GP was stressed and impatient to put the phone down, so talking through my concerns was not an option. Your post and others have been very helpful though, thank you.
If your GP is dismissive ask to speak to another one or consider asking for a double appointment (20 mins) face to face appointment if it can’t be covered in a 10 minute slot - especially if you have a list of questions write them down, otherwise your GP probably has an on-site clinical pharmacist or medicine team - ask for a telephone meds review or finally do you have a cardiologist - ask for a referral/appointment or send a letter to their secretary 😊
Thanks again, there are so many of them and no continuity, so I've decided to see a cardiologist privately and will be able to self refer. The GP had previously agreed to refer me but then decided the practice could handle it. I'm sure they can, but I would still like to talk to an expert.
My husband was diagnosed with afib in January of 2019, was put on metoprolol, apixaban and atorvastatin. A couple of weeks later he fell from his blood pressure being too low and being dizzy, he was taken to the emergency room and had a ct of his brain and it showed an aneurysm. Some of the aneurysm had calcified so it had been there for a while. In September of 2019 they coiled the aneurysm because it had a newly acquired "sister". He has to go yearly for a brain MRA. He has been on apixaban since January of 2019 with no problems. Had he not fell and had to have a brain CT because of being on apixaban I don't think he would be here as we wouldn't have known of the aneurysm.
O my gosh, what an unusual sequence of events Coxcabin! An undiagnosed aneurysm or similar is one of my fears. In your husband's case, his fall caused by medication led to its discovery and treatment. Thank you for your reassurance about Apixaban and I hope he continues to do well.
Apixaban does not thin blood but slows down blood clotting.
I had a stroke in 2019 caused by AF which I didn't know I had. I was lucky that the damage was minimal but the psychological impact was massive. I've been on Apixaban since and have been fine, I don't think about any side effects as the effects of a stroke far outweigh the "what ifs" of the drug.
Hi Quivery I have been on Apixaban for 5 years and no problems apart from a few random bruises which just appear from nowhere. When I had my ablation the bruising from my groin reached my ankle not the light bruising I was expecting! Apart from that happy to have the protection especially as I am a (helmet wearing!) cyclist. I hope feel confident to make the right decision for you after all these comments. Good luck!
Thank you for your reassurance, I can cope with a few bruises! I love the outdoors too and worry that something might happen when I am out alone in the wilds. I think this would give me more confidence thank you.
Interesting. My score is 2. Initially I was put on Eliquis. I wear an Apple Watch which detected the one episode, but in almost 8 months there have been none. At the last visit my doctor said it was up to me, but suggested I maybe come off the Eliquis. I read the reply by Bob Close said any diagnosis is a stroke Kris. Now I am concerned that I am no longer taking it. I am 73. I ski and I cut myself often because I work with glass- any comments?
I see your dilemma Bks, especially as you do fast sports and would be prone to cuts from glass. I'm finding this forum helpful in coming to a decision - I hope it will help you too. In the meantime, your watch will hopefully be able to detect any further arrhythmias, which would make the decision more clear cut for you.
I have been on Apixaban since I had a stroke in December of 2016. I have absolutely no side effects. I have cut myself a few times over the years and had no excessive bleeding. I was diagnosed with Afib in 2004 but it was well controlled until it wasn't..lol. I had an ablation in November 2017 and have not been in Afib since thankfully. But it still take Apixapan, I would be uncomfortable without it.
HI BKS, Like you, I was found once with afib and never again. This was October of 2020. I bought a Kardia and check myself several times a day. There has never been another event of afib. I was originally prescribed Eliquis and took myself off. At the same time, I lost 28 pounds and started eating sensible and walking 45 minutes a day. I made the call and told my new cardiologist and was reasonably ok with my decision. We are the same age. I couldn't tolerate the eliquis and certainly cannot tolerate a statin. My cholesterol is 138 but my calcium score was moderate at 337. I have never felt better and I'm unsure why I was in afib one time and one time only but it appears either the testing machine was wrong or for some reason, at that particular time being overweight, I tested differently. And by the way, I went on cpap for sleep apnea which has also had a hand in assisting me. If I'm only fooling myself, I'm the fool but we all are responsible for our own bodies and I think a large majority of people that are put on blood thinners probably could do just as well by taking care of themselves.
Hey Mr…on a lighter note. You’re ‘treading on thin ice’ when you refer to anticoagulants as blood thinners. The ‘nit pickers’ on this forum will be most upset indeed. Just thought I would get out my wooden spoon, to spice things up a tad… Knowotameanarry ‼️‼️‼️
Hi Quivery, I was pleased, delighted even when, following my initial AFib diagnosis, I was put on an anti coagulant (Warfarin). I was told that this would lessen the chance of a stroke. Why pleased, you may ask? I watched my father take 7 years to die, following a massive stroke. Anything, anything, which lessens the chances of ending up like my old man has to be actively welcomed, whatever the downsides.
For years I fought my EP Dr. about taking apixiban, but I had a heart attack and I decided to listen to him. No problems at all although I bruise easily leaving red marks wherever my body come's in contact with a stationary object but no big deal, goes away in a few days other than that I have a lot more peace of mind that my stroke risk has gone WAY down. It's very normal to be leery of any medicine but if it's for your own good it's better than the alternative of not taking it at all. Have a Blessed day.
Thank you Kocoach, that's so kind. Having the peace of mind that I will be reducing my stroke risk seems a very good reason to take Apixaban. I hope you made a good recovery from your heart attack.
The only concrete statement I've heard from doctor(s) in 20+ years of AFib (including three ablations) is You Must Take Your "Blood Thinner." Yes it is not actually thinning the blood, but rather deterring clotting, but they are all firm on that because they all know the risks so well. Otherwise the most solid thing they can come up with about AFib is "you just have to live with it." Which has proven to be true, although very tiresome. Cheers from California!
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