hi……I’ve had a single AF episode over a year ago and was put on Apixaban. I’ve been okay on it, but a while back I had about 3 months of nose bleeds on and off with long clots coming out (yuk). They would start uncontrollably at the most inappropriate times, lasting from 25 mins to just 10mins. The nose bleeds have stopped now. Sorry to be descriptive but 3 days ago I had a blood clot stuck on my teeth! I also tasted blood in my mouth.
The next morning I awoke with blood on the pillow case and a very large clot again in the mouth. Obviously I’d been bleeding during the night. The strange thing is that I had a fever the night before and have been battling with a cluster headache for some days. My imagination went wild and I foresaw brain tumours and all sorts. I’ve made an appointment with my dentist tomorrow but my GP could see no signs of infection around my gums and throat. My cluster headache has also gone.
Like me, my GP thinks it is the Apixaban. I asked him if I could please stop them as I have read that they can cause bleeding on the brain as well as other problems. He said the choice was mine whether to stop taking it or continue as long as I knew the risks. I am aware that I could have another AF at any unknown time in the future which may or may not bring on a clot, but I’m also not enjoying bleeding and large clots appearing out of the blue for the rest of my life.
I have a friend who had an AF episode which was diagnosed, but was never prescribed anticoagulants.
I’m aware that I could be foolish in wishing to stop, but would welcome some advice to what to do.
Btw I’ve had a couple more ECG tests since plus an Echocardiogram test which showed a perfectly normal heart. I think and ECG shows the electrical ?
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Carole1212
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i'm gonna just copy and paste a reply I just made a few minutes ago on basically the same topic. I was referring to thinners post ablation, but conceptually it applies to anyone with infrequent afib episodes like yours.
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(The advice) varies by ep. I'm a CHADS 3 (2 points for age) and my EP told me we would evaluate thinners at 3 months post ablation, depending on my afib burden at that time. A previous EP told me I should be on thinners indefinitely unless the current research changed. I'm from the US.
Speaking of research, the React-AF trial has just gotten underway in the US to study whether short afib episodes require daily anti-coagulation even with higher CHADS scores.
Do not be swayed by anecdotal stories here about strokes, because there are also anecdotal stories about major bleeds.
Stick to what your EP tells you, the science and your own independent research.
The bleeding is not caused by the Apixaban. You must have an underlying condition to cause bleeding. The fact that you are on Apixaban you will bleed more.
You need to have investigations as to the cause of the bleeding. Get that fixed and the bleeding will stop whether, or not, you continue to take Apixaban.
Chances are this is a nose bleed, but because you are laying down in bed it is going down the back of your throat into your mouth.
My 90 year old uncle is on Apixaban and was getting nose bleeds. He was referred to ENT and his nose was cauterised. Never had a problem since, but is still on Apixaban.
Obviously, the decision as to whether you stay on Apixaban or not has to be yours. I am not trying to sway you either way.
Ask for an appointment with an ENT Specialist for further evaluation. Anticoagulants can sometimes identify underlying issues.
I’ve had a single AF episode over a year ago
And no more AF episodes ? Are you monitoring your AF status with a home device or regular doctor visits ? Definitely check with the doctor about Apixaban and other medications.
Hi…and thankyou. No more AF episodes. I have the Omron which picks up ‘possible AF’ which I use every day two to three times per day. The AF that I had over a year ago made me feel very unwell and a trip to A&E where I could hardly walk on a small incline without stopping for a minute.
I haven’t had a nosebleed for a good few months now.
Psymtomatic Lone PAF is bad as it stops you doing most things but good as you know when you are in AF when awake. It may also wake you up when asleep. I also have pulsatile tinnitus which is annoying at times but good in so much as you can, when awake, check your pulse quickly by just stopping what you are doing for a few moments and listening. If in doubt this can be checked my feeling your pulse in the usual way.
Thankyou Mrsvemb. I thought about this…and could have just one possible answer about the ‘underlying cause’. I’ve consumed a fair amount of ginger in homemade soup lately which is a no go with Apixaban. This gives a greater increase. I understand your answer and thank you for letting me know. I have researched that although the risks of nosebleeds and bleeding gums are at a lower risk than Warfarin, it is very much still a side effect and one in which to be aware of. This bleeding seems to take place without prior cause, so it states. A nosebleed and bleeding gums are definitely a new thing for me to have experienced. I am seeing the dentist tomorrow to check my gums. My GP said he thinks they should be okay but from then on he told me it’s my choice whether to continue with the Apixaban or not. Another Gp might be in order.
I've never heard this re ginger, which I eat most days in some form or other. Curious to know where you heard this I've been on Apixaban for 4 years and no problems other than when I bruise it looks unsightly.
I look up drug interactions on an official site. Other places on the internet say the same. I find the Drug Interaction quite good. Be cautious when using it together.
I would think so yes. I have to admit though that I had recently done 3 loads of homemade soup and had put in lots of ginger…enough to spice up one’s mouth type of thing. It was just a thought. I am super sensitive to herbs, meds etc so I just wondered if perhaps eating so much of it lately had done this? Who knows?
Yes, in that sometimes bleeding with a thinner is the canary in the coal mine.
But no, because unfortunately, especially as we get older, not all of our systems work the way they are supposed to which means that some are more prone to bleeding than others, without an easy fix.
A slow upper GI bleed (not lower) is one such example, where the "fix", if possible, can be quite invasive and often not recommended. If someone is not on a thinner, there may be no bleeding or it could be inconsequential. If on a thinner, it could become problematic. And now the question is do you try some invasive surgery, or re-evaluate the risk/rewards of taking the thinner?
This is not a hypothetical case, but something I may be dealing with. There are many other examples and that's why when you look up the side effects of thinners on any reputable web site, most of them concern bleeding.
I unfortunately have experience of this same conundrum. My mother, frail, dementia, AF and in a care home, suffered from regular bleeding from nose and with low haemoglobin, potentially unidentified mild internal bleeding. Too frail to do much investigation as surgery would be out of the question. Dropped the DOACs, loss of blood and symptoms reduced. Survived Covid then out of the blue had a stroke in Jan 2022. Would this have not happened if she’d have stayed on DOACs? Who knows, it’s a complex balancing act and the only certainty is what you actually experience, The ready is speculation, hopefully based on probabilities from reliable research and patient specific experience.
The decision to prescribe is made on your risk factors at an overall population level, but we’re all individuals. If you can, a referral to an anticoagulant clinic would be ideal as you may well have an undiagnosed bleeding or clotting disorder that might need to be investigated. Sometimes it’s very difficult trying to decide what to do for the best if your doctor is saying “it’s your choice”.
Hi CaroleApart from the bleeds which may be associated with blood pressure issues, your other screening results are positive and good news.
Like you, I had a single paroxysmal AFib detected in May, following in my case the implanting of LINQ ECG device 3 months previous. However, I have had a severe stroke a year earlier. All the screening results post stroke couldn't determine a cause and several goes using Holter monitors over the year failed to detect Afib.
Also good news, although a tad unpleasant to experience , is that your bleeds have clotted, albeit more slowly than normal,hence bigger clots.
In the absence of Afib detection I was on antiplatelet meds to reduce future strokes. The detection of Afib meant an immediate change to anticoagulant as this is perceived to be a greater risk, of future stroke.
A stroke , however mild, is in my view to be avoided at all costs. It is a very scary experience.
I'm sure there may be options to discuss if you go back to your consultant who would originally have made the medication decision. I'm sure there may be options to lower dose or try another DOAC, I am on EDOXABAN, with no obvious issues. I do bruise a little more easily, and cuts are sometimes a little slow to stop. A small amount of any liquid when spilt always looks a lot by the way! But I had a major operation , while on antiplatelet meds, which required to stop three days before the op and started again the day after the op. 4 small incisions and one large 6 inch opening below my ribs. No issues, just took longer to heel fully.
You have to weigh up risks.
For me, I take the advice of the trained and experienced practitioners any day.
I am male aged 71, I wish the Afib had been detected and I'd been offered an anticoagulant before my stroke! This is current NICE guidance if Afib is detected which aims to reduce deaths from strokes by 6500. Normally EDOXABAN is prescribed, it is more cost effective for the NHS.
Thank you. You are exactly the type of person we should listen too. Anti meds/anti this/anti that people are ten-a-penny on the internet but they are not responsible for OUR healthcare. They have their own agenda and they don’t care about the likes of you or I, or any of the people with diagnosed health conditions who have joined a forum such as this one. It’s all very well suppporting an anti-meds/whatever personality/influencer but they don’t know the first thing about us, they don’t know our medical history, they don’t treat us and may well not be qualified to treat us. Followers exist for their benefit. It’s all one way. They are not cultivating their online presence for our benefit. A professional opinion from someone who is looking at your blood tests, your scans, your ECGs etc is far more valuable than what some internet chancer says.
I do appreciate what you've said here - these influencers do not know us and our particular health profile. The followers are for them. Some of what they have to report may be useful but always check it out for ourselves and make an informed decision.
Unfortunately a lot of people follow all sorts of nonsense peddlers. There are some people who give good science-based information as opposed to belief-based pseudoscience and popular myth. Some of it may have a grain of truth but also a lot of fanciful extrapolation and fictional pet theories superimposed on top. How do you differentiate those offering good, solid evidence-based information from the pseudoscientific trash? As long as you have sufficient scientific literacy and media literacy, and you employ a rational and critical mindset to ALL of the information you encounter, and even then you have to guard against your own internal biases. And we all have biases. You just have to look at the faith people put in turmeric, for example, but the evidence for its therapeutic benefits is weak. But you can bet that people will get a bit emotional about their turmeric capsules and be prepared to argue the toss about it. That’s an example of a person bias and we all have them, and it’s something we have to guard against when we are trying to evaluate our information sources. So, there’s the quality of the information itself, it’s evidence base etc AND there’s how we filter it based on our knowledge and our own personal slant.
I will add that the Echo showed normal healthy blood flow and clotting screen time was normal ECG all good too. Heart in perfect working order as my doc said.
My average BP over a 7 day to 14 day period is around 133/70.
I recently had a tickly cough which was investigated by way of an XRay which showed all good. A sputum test as well. I thought the bleed was happening because of the cough but as I checked further it was coming from the gum as I saw it refreshing from there. Once I had brushed my teeth and used a good antibacterial rinse recommended by my dentist, the bleed totally stopped and has not returned. I am thinking that I should continue with the Apixaban upon hearing about risky strokes. Upon reading the above messages, I might be foolish in not taking this med.
I am a very anxious person in general and for this reason I am thinking that I should continue with it.
If it is your gums, you just have to be very stringent with your brushing and flossing,. I don't know if you have an electric toothbrush, but they really are an enormous help. Your dentist's oral hygienist will show you the best techniques for brushing and flossing - a water flosser is a very useful addition to you dental care armory. The anti-bacterial mouth was should not really be for long term use, but good oral hygiene is a must ! All the best
I don’t like electric toothbrushes. I find them very harsh on the gums. The consultant I saw at Guy’s Hospital in the department of dental medicine told me that he never uses one and doesn’t recommend them. I don’t use an electric anything on my teeth and gums, and my dentist and dental hygienist have told me my gums are good. It’s the regular practice that matters, not the devices.
These days there is a large variety of electric toothbrushes, from children's ones to those designed for use by teenagers with fixed orthodontic appliances. T,hey are not harsh scrubbing brushes. I was merely suggesting that one may be of value to the writer, not insisting she buy one. You may not be happy with them but millions of people are and so are very many dentists and eminent dental specialists, so you cannot generalise. Ask the Guys consultant if they still use 'The three 'Ps' !!!!
I don’t go to Guy’s any more so I won’t have that opportunity. It wasnt that long ago so the toothbrushes in the shops haven’t changed. It wasn’t as if he was some old bloke who didn’t have a clue, or whatever you might be imagining. I have a fairly recent electric toothbrush but regardless of the setting I find it pretty harsh on the gums, so I don’t use it. As I said, it’s the regular practice that gets results, not the devices.
I fully agree, brushing twice a day for two minutes using the correct technique with a soft brush, manual or electric brush ( I have to disagree there, you can get soft brushes for an electric toothbrush), and flossing at least once a day using a floss threader where necessary, is absolutely essential for good oral hygiene. Sadly, they no longer make the softest brush of all which was the manual badger's hair toothbrush, which was wonderful for sore gums and after periodontal surgery. So let's agree to disagree, I'll use my electric toothbrush and waxed floss followed by my water pick (battery operated) and you use the manual devices of your choice, and let the writer select what suits her, and we will all be happy with a mouth full of teeth, firmly seated in healthy pink gums.
I tend not to floww but use my water flosser every day (I find Water-Pik and not battery operated to be exceptionally good). My dentist and hygienists always rave about how clean my teeth are. I have sensitive gums and I think the fact that my mouth stays so clean helps to reduce that sensitivity.
I would also put the BP monitor out of sight for a while. 😊
Carole, I can only Sympathise. Do have a chat with your dentist. I also suffered with bleeding on anti coags. I never did before the anti coag. The trouble is these anti coags are a one size fits all. There is currently a piece of research looking at whether different dose levels work as well for different people..... ie individual dosage rather than a population average. Trouble is the results will not be out for several years as yet.
In the end, in discussion with my GP and EP we settled on half the usual dose. My bleeding stopped. I was grateful. However of course they can't guarantee I have the same protection as a full dose.
It's a tricky one really because you do have to weigh up both sides.
Since then I had a heart op which included closure of the LAA flap which means the risk of a clot is greatly removed. However I'd move to persists Afib. by then so my op was much needed.
I think you need to chat to your cardiologist to discuss what's best for you.
And I would investigate further if it's gum related with your dentist.
my wife is an retired ENT nurse, nurse. She advises putting Vaseline up your nose before going to sleep as it stops. The nasal lining from drying out when the nasal lining dries out it can crack and bleed.
This will be the other end of the scale. I was 38 when diagnosed with AF and not prescribed Apixaban because of my age and being low risk on the chad²vasc score. But unfortunately I had a stroke at 43 . 5his year. I would have loved to have had the choice whether to take apixaban. This is where I want guidance to change and there be patient choice involved. Now Ive had a stroke I score high enough to take apixaban. And take 5mg twice daily for prevention. I haven't had any side effects like you have experienced. But I will not consider stop taking it as I do not want a second stroke. Just be sure you have all the facts regarding risks before you stop taking it. I do hope you have an improvement to you quality of life. But also a safe one. Take care 💗
I have seen several stories like yours on this forum and they all say “I wish I’d had the opportunity to take the ACs”. 43 is so young to have a stroke. I am also told I am low risk but my consultant has just referred me to the anticoagulant clinic in spite of that. He’s a well respected EP in the UK who specialises in arrhythmias, and he’s looking at me sitting in front of him, and at my test results and my history, so his opinion is worth more than a random from the internet stating that cayenne pepper will save us all.
I would ask for a consultation with an ENT consultant. The anticoagulant doesn't necessarily cause the bleeding but can make any bleeding worse. It's likely that you have a problem somewhere within ENT area and the anticoagulant could be highlighting this problem.
Hello Carole, your post has attracted lots of helpful advice. It doesn’t happen very often but anticoagulants will exacerbate bleeds but as far as I’m aware, they do not cause bleeds therefore as you have already established, it is important to find the cause and that can be quite difficult. If you click on the link below, you will be able to access information from the AF Association website which you should find helpful.
Unfortunately, we are no longer able to provide links to other sources of useful information but if you search Professor Richard Schilling on YouTube, you will find a video titled “At the limits - Leading Medical Education” which I think you will find very helpful.
Whilst it is important to be mindful of the bleeding risks associated with taking anticoagulants, here in the UK almost all medics seem to suggest the risk of stroke outweighs the risk of bleeding when there’s a CHADs score is 2 or more but of course, it is important to follow the advice of your EP and to make sure that he is aware of the problems you have experienced.
I have a bleeding disorder which causes nosebleeds like that all the time. I've just come off 'blood thinners' and it didn't make as much difference as I had expected to my surprise. Took me six weeks to be brave enough to stop taking them even though I had EP permission and afib well controlled by Amiodarone. Best to talk to GP as you might just need a cauterisation to sort this out.
l must say your doctor doesn’t sound very helpful. I think you need blood tests to find out what is going on there and also you need to see a ENT specialist to get that nose cauterised. I had same problem with nose bleeds (l am on Warfarin) but after cauterisation l dont have amy more problems. Don’t sit on the shelf with this. Good luck.
I agree with others..they beat me to it in recommending that you see an ENT consultant. When I was working I had exactly the same bleeding as you. I wasn’t taking Apixaban then. I was referred to the ENT folks at the hospital where I was working. Actually I had a big bleed on duty and was whisked up to the department where they cauterised the bleeding spot. I have never had a nose bleed since.
I used to be woken most nights with bleeding and it went on for about six months. It was a huge relief when it stopped.
Get seen…stick to your guns. It is a very short outpatient procedure. Good luck .
hi Carole. Your question is very timely. My husband had a massive nosebleed on Saturday resulting in him being admitted to hospital overnight. It was a posterior bleed so very difficult to stop so he lost a lot of blood. It was very traumatic. He has been on Apixiban for about 6 months following a post operative AF event. He has not had a recurrence of the AF so I am now wondering whether he should stay on the anticoagulant or possibly reduce the dose rather than risk the bleeding happening again. It is so difficult to know what to do for the best and we are not due to see the consultant again until next June. We are hoping to get some advice from the GP. I hope you get some answers and are able to make the right decision for you.
The EP I saw told me that unless an AF episode went on for 12 hours or more with a high heart rate I was not at risk of stroke so since being on a dose of Flecainide which has virtually put an end to AF episodes, I have not taken anticoagulants and still here at 79. Of course we are all different but I had dreadful side effects from the anticoagulants too. Flecainide does increase the fatigue I have but does not mess up my digestion quite as much as the anticoagulants did!! If you got a Kardia (and the app on your smartphone) you would be able to check up on ECGs yourself and see how your heart is doing.
Just remembered that when I was 9, I had what turned out to be paratyphoid which started with a nosebleed while on holiday in Switzerland. It had to be cauterised in the end which was fairly traumatic and I then had to spend quite a while in hospital there! Hope yours was just from the anticoagulant and nothing more serious!
We all have our opinions but each one has to decide for themselves after they get all the information they can. I think doctors are a great source to find out what you don’t have.
I had this conversation with my EP cardiologist and he told me that anti coagulants depend on age 75 and older, and duration of the AF. In his opinion over 24 hours. Mine were never that long.
Perhaps you needed an anti coagulant for short term after your episode, that is a question for your Doctor.
If you have only had 1 episode for the last year that is great. Most of us agree they are brought on by stress. I recently have learned we can created stress in our own bodies by not eating properly. Not eating enough, intermittent fasting, low carb all these crazy diets out there. As many have stated on this forum electrolyte imbalances are something to pay attention to also.
hi there……..well….an update…….my dentist today gave me an all clear that there are no gum related problems and no trauma to the gums…..so the plot thickens as to what the bleed and huge clot was all about. My GP doesn’t seem too fussed about anything so I don’t think I will allow myself to see him again really….unless he is just laid back by nature which doesn’t help me much. As I mentioned …..my nose bleeds are not ongoing and have stopped many months ago. A small scab was there which I believe could well have been the cause of the nose bleeds. The small scab has long gone which makes me think it was the cause. As to the bleed in the gum area….this remains a mystery as there’s nothing to show up. My GP put it down to the Apixaban. I have no words for any of it and so it remains a mystery. It has nothing to do with brushing of teeth as such as a smaller blood clot was produced in the daytime from the mouth for no apparent reason except that I did have a taste of blood earlier that day. I enjoy the electric toothbrush and have never encountered bleeding due to brushing. I just wish I knew why it had occurred. Even my dentist had a frozen face look and stared at me as if he had no idea. 🤷♀️
I had nosebleeds very often and at inopportune times for 40 years. My exam papers would not likely be marked today if they had blood all over them like they did when I was in university. 😀 My friend told me to stop drinking milk, which I did, and I never had a nosebleed again until I started anticoagulants 33 years later. Maybe just a coincidence; but not drinking milk, if you do, is easy to try.
I used Vaseline for years. I have read recently that this not a good idea but cannot remember why. I think it may be because of the petroleum in it. You could research this.
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Coming off Apixaban
Anticoagulant and bleeding - your experience? 
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