My dad has AF and is 72. He has unexplained bleeding from Apixaban for many years. His Haemoglobin has been in the 95 to 113 range ever since he started Apixaban. His weight is about 59kg. His chadsvasc score is 2. He was on flecanaide but recently he was diagnosed with Heart failure, it appears his AF has become persistent and now he has been put on digoxin. He had a colonoscopy, ct scan and gastroscopy 5 years ago after temporary stopping apixaban and all was normal. They couldn't find the reason for bleed. He also has oedema now so is on flurosemide. He has had asthma since childhood and developed psoriatic arthritis in his 20s. He doesn't take any medication for psoriatic arthritis as it interacts with apixaban.
I got a lot of helpful information from a thread I started on 'healthunlocked.com/afassoci.... Since then he has included non acidic form of Vitamin C with his iron dose.
However I have finally booked a private appointment with an EP for this week as he has not yet been referred to a cardiologist/EP on NHS for several weeks.
My main concern is the bleeding.
1.Has anyone experienced bleeding from DOACs?
2. What options were you offered?
3. Have you been asked to remain on DOACs despite the unexplained bleeding?
4. Was your unexplained bleeding resolved and what was the cause?
This information would really help me have the discussion with EP.
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priya_uk
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I wish you well with your quest for information, you are asking very pertinent questions.
I am sorry that I cannot help as I have had no bleeding issues on Apixaban but will be following your thread with interest as I have noticed a few threads along similar lines so believe that some people just maybe susceptible.
l don’t take Apixaban as my anticoagulant. I can’t tolerate the new DOAC’s and as a last resort have been given Warfarin. There is, most definitely, many questions l would want to ask as your dad’s care sounds very unsatisfactory. I would not want my dad to continue with this unacceptable situation. I hope someone on here will come along and help you more than l can,
Best thing ever,l think. It’s a big concern for you, so you need to ask some serious questions and some action taken. I am sure you will get the help you need now that you are seeing a good EP. I know some people on here have had bleeding from Apixaban, so perhaps glean some more advice from their response. Hope your dad will soon be feeling better. Take care.
I have had no problems from bleeding whilst on apixaban so can't comment. I have not noticed that I take longer to heal after wounding myself in the garden or doing DIY jobs - and I do tend to do that a lot. If there is any difference it is minimal and unnoticeable. I do bruise more easily but then I am over 80 now and this does happen as we age and I presume anticoagulants don't help. Usually it is said that the anticoagulant doesn't actually cause the bleed but an underlying problem bleeds more readily because of the anticoagulant effect so you get a prior warning of there being something else wrong. The first thing they usually check is the gut. I have had this done twice now. The first time nothing was found apart from benign polyps which were removed. I then had other scans and a gamma scan to make sure. I believe the low blood counts had been caused because of recent Radiotherapy treatment for Prostate Cancer. As while taking Iron tablets for only a month brought my count back up - amazing! If I remember rightly they told me to take the iron tablets first thing in the morning before anything else with orange juice or black currant juice as the Vit C in them helps to absorb the iron The second time back in April this year I had noticed I was passing a little blood with some bowel movements and had a colonoscopy which found that I had a slight hernia in the bowel and every time I had a bowel movement this was sort of grazing the surface where the bowel was slightly narrower and causing it to bleed. As it was only slight it was deemed no further action was necessary - though if worse I could have an operation.
I hope they find out what is wrong with your Dad and glad to hear you have decided to get a private consultation. While doing this ask if your Dad can be added on the consultant's NHS list at the consultation and therefore he will be able to continue to have any expensive tests and scans etc done via the NHS.
Thanks for your good wishes - for my age I am doing well. Thankfully my Cancer has to all intents and purposes been cured with few and short term side effects fromm the treatment - but still every annual PSA test causes a little anxiety
As an afterthought thought I would tell you that I bought special wound seal powder (Called "Wound Seal") good for stopping bleeding quickly - quite expensive, only used it twice once a while ago when I ripped the skin on my arm when pruning - wife bought me long sleeved gauntlets now and once a week ago when I fell in the kitchen hitting my chin on the granite worktop - OWWWW breaking a couple of teeth and cutting the outside of my chin. It kept weeping blood for about an hour - not much but it just annoyed me - the inside of my mouth stopped bleeding quickly so as the wound seal was near it's expiry date I used some. It comes in small tubes and once a tube is opened it should either all be used immediatley or thrown. The pack I bought had 3 of the small tubes so now two used and one left that I doubt I will use before the expiry date - ha, just checked and expiry date is tomorrow - though I would probably use if necessary in the next couple of months. If wounded and bleeding will not stop then obviously one would need to go to a clinic or A&E. You may feel this might give you and your Dad a better sense of confidence if you had some of this? We also have butterfly strips and all sorts of things for closing wounds as I have such wonderful adventures in the garden - fell 30ft through dense trees once when I was attempting to cut the tops down narrowly missing being skewered by the loppers as they fell after me but landed quite softly and didn't even cut myself as the trees slowed my descent and cushioned me - also fell off ladder because I was wearing varifocals and couldn't see the last 2 steps when looking down as looking through the reading part of the glasses. I am commonly known as "Dangerous Des"
The only time I would go to A&E is if I fell and hit my head really hard - like in seeing stars as would need to be checked for bleeding in the brain - so wear crash helmet for cycling and skiing and any other sport that might cause this. Though I did go when I fell in the kitchen the other week and nothing found but glad I went if just to shut my wife and daughter-in-law up.
Also make sure your Dad carries a card or something that will inform people he is on an anticoagulant in the case of an accident - I get a card in every pack of Eliquis I get otherwise ask about getting one.
Your experiences made by day. You seem very fit to be cycling and skiing and falling 30ft from trees! Amazing.
Thank you for sharing that tip. My dad had an accident on the pavement and hurt his head a couple of years ago and I remember being shocked by the intensive bleeding that happened. Will definitely stock this product.
Have a lovely weekend with whatever adventure you are up to today :). By the way I completely get your wife and daughter in law's perspective, I would have the same reaction.
For what's its worth I've been on apixaban for a year and so far no problems.... I was a bit paranoid about it at first but had a stumble recently with cuts and grazes but it hadn't a huge effect on my healing only difference is the marks of the wound seem to take longer to fade
When I was first diagnosed with paroxysmal AF aged 65 back in 2010 I experienced massive, random, full flow nose bleeds .... but that was the only bleeding I ever had. At the time I assumed this was down to the anticoagulant Warfarin that I was on. It turned out it was due to the Bisoprolol I was taking. My Bisoprolol was originally prescribed to be taken in the morning. My GP changed this to be taken at night and I have never had a nose bleed since.
Since then I have remained on Warfarin with the exception of 4 to 6 months on the new DOAC Edoxaban ... this gave me ghastly side effects, namely, the most vile nightmares ... ever ! This of course meant loss of sleep ... big time. Discussed this with my GP, I refused to take it any more and I also refused any of the 3 other DOAC's too.
So, back to Warfarin. I have always self tested for my INR which is the indicator that my blood viscosity is correct. This is the downside to Warfarin along with the fact that you need a Surgery to support you. Nevertheless ......... if I'm clumsy I will bruise very easily and if I'm totally clumsy ( like the other day ) I might knock myself on the corner of an item of furniture and give myself a small gash and I bleed very quickly. All I do is clean it, spray it with a spray plaster and then put a Band aid over it and leave it. Try and let it breathe and it heals just fine.
If you get onto the NHS website and do a search of medication it will give you a list of side effects for various meds. Whatever you decide this would need to be discussed with your GP. My understanding is that any of these anticoagulants ( both Warfarin and the DOAC's ) will cause bruising and bleeding.
Thanks for sharing your experience. We were going to see if he can take Bisoprolol instead of Digoxin so this information is pertinent. Also knowing that changing the time to night is very valuable . Your GP is good.
With Warfarin, how do you measure the INR yourself, do you use a home monitor. What brand do you use? Are there any other tests you need to do regularly while taking Warfarin?
I have put a photo on here of my device known as the Coaguchek XS Testing device. All you do is put a test strip in the black slot at the bottom of the device ... watch the prompts. Prick a finger. Drop some blood on the test strip and wait for a reading. In my case I am in range with a reading of between 2.0 and 3.0, so if I get a result of 2.4 I'm in range and wooo hooo away I go. From the INR value your surgery can determine the ongoing dose of Warfarin and the next test date. This is a very simplified version but your GP should be able to give you the support you need.
Basically the whole process works in the same way as a diabetic undertakes when measuring blood sugar. No different, no more of a drama ... simples. I might add that if I go to Australia to see family for a holiday I take mine with me and just coordinate things with my Surgery before I go. The main significant factor that affects the INR reading is diet, both food and drink. In this regard I recommend you search Warfarin and food and drink.
If you wish to, go to the Coaguchek Website ( it may be under Roche who are the manufacturers ) and explore.
Not sure I properly understand your last question ............ however ..... if you are prescribed Warfarin and you use the Coaguchek XS system that's all you need to do. If there are other medical conditions a patient may have - which require regular testing/monitoring no reason why Coaguchek XS testing cannot continue side by side with anything else - that I am aware of, but, again your GP could provide more information/advice.
Thank you for sharing this info. That's really helpful information and saves him the time to go to GP every 2 weeks unless needed. I found the device online so that's great.
Not a problem. With this Coaguchek device and process is a bit of a learning curve and two weekly checks would be fairly normal. That said, as you master the device and the process and as your INR becomes more controlled and settles into a regular pattern (mine moves between 2.1 and 2.7 and is so regular that I can go between 8 and 10 weeks between tests). Every now and then my readings chuck a wobbly and drop to below 2.0 or sometimes above 3.0 for no obvious reason ... I just ignore it, no need to panic, it is probably something I've eaten and I can't remember what. The most important thing with Warfarin is consistency in all you eat and drink. Warfarin just loves consistency. I have to say I am my own worse enemy as I hate veggies .......... goes back to when I was a little kid 😀
I can't remember if I put a photo on ..... if not here goes ...
my family may have a bleeding disorder, Von Willebrand, apparently there are different variants. Only realised about 6/8 months ago. I have been on Apixaban for past 3 years and have always been concerned due to previous bleeding issues when I’ve cut myself. Had ablation mid February and no one will advise for me to stop it! Currently trying to get Von Willebrand investigated to see if I do have it as it is not advisable to take anticonvulsants. I have telephone call on Tuesday with consultant haematologist for Haemochromatisis 🙄 which is a genetic liver disorder where you can overload iron.
So dad needs investigations to obviously find out what is causing this m.
Ps had a really bad fall causing unbelievable bruising and a haematoma on my hip in July and convinced Apixaban had definitely something to do with it, had falls before without damage such as this!
Thanks for sharing. I wasn't aware of this bleeding disorder and will look it up. Also it's interesting to know impact of iron on liver. I don't think he has ever been referred to a haematologist to understand impact of his meds on other things but it's something I will explore.
Sorry to hear about your fall. You are dealing with a lot. Wishing you well and I hope your doctors help you with diagnosis and put you on a good treatment plan. I really appreciate that you shared your experience. Thank you.
I am on a different blood thinner from your father (rivaroxaban) and find that I bruise really easily and that even the smallest cut will bleed for hours and go through even the thickest plasters within minutes. The GP once told me to go to A&E with a paper cut on my thumb as it had bled for 7 hours. I make sure now to always carry steri strips and plasters in my bag when I go out.
Hi thereThanks for sharing you experience. I'm sorry you seem to have gone through a lot in your life.
Evidence that he is iron deficient is that his Haemoglobin is at 95 even though he is taking Iron supplements. His FIT test is always positive showing that there is blood in the stool. Last time he was investigated for iron defence anaemia in 2019 and colonoscopy, CT scan and Gastroscopy were normal . His Haemoglobin was at 95. The cause of bleed was not identified. The assumption was that because he was on apixaban which was stopped temporarily due to these procedures, it may be the cause. However he was kept on Apixaban and I don't know the reason for this so I am curious to learn if others had a similar experience.
He was checked for gluten intolerance. He doesn't have Coeliac disease.
He has seen a dietician privately many times over his life and is on a plant based diet (no unhealthy meat substitutes). He doesn't consume alcohol or smoke as he suffered from psoriatic arthritis in his 20s and always did whatever was in his control by maintaining a good diet and lifestyle. There are certain foods that trigger his arthritis pain so he goes for alternative options.
He has not been seen by any consultant since he went from paroxysmal AF to persistent AF. He found out through a letter that he has HF and that his meds would be changed from Flecainide to Digoxin. I have a lot of questions for EP including the cause of the bleed. I've decided to have the consultation privately as I need a lot of answers and I'm not prepared to wait indefinitely. He has never has a elecrrical cardioversion or ablation.
I don’t know if this is any help, my 81 year old brother had severe pain and massive swelling to his legs. Has been on apixiban for several years with no problems. However he went to A and E where they thought he had clots, but after the tests it was negative. Apparently he had bleeding in the muscles.
Advised to rest with his legs up high and gradually his legs returned to normal
I have a/f had it for 24 years,recently I was rung from the cardiologist who asked how I was, and why I am still on warfarin, I replied I was not suitable due to kidney desease, he looked at my records and thought there was no reason why i should not change, am waiting to see my GP as there is some confusion.
The cardiologist also said that you could get bleeds from both products,
The main reason for me to alter my blood thinner is because I have difficulty getting to the surgery for INR tests, after some medication.
Hi there, thanks for sharing your experience. I will look up bleeding from muscles. Regarding the INR check, see post above from BenHall1, he uses a Coaguchek device to monitor INR at home. I wonder if that would help you?
You might look at your dad’s HAS-BLED score to balance against his chadvasc risk. Only he can determine which risks he wants to run for his quality of life.
When my mum was first put on Rivaroxiban she had unexplained bleeding. She met with the Haematologist and they changed her over to Apixaban which she tolerates well. Maybe Haematologist input is required?
Has your father any issues with his kidneys? Has he had a scan?
Please make sure the furosemide monitored. Last year my mum was on furosemide (swelling the legs)for 6 months the furosemide wasn't monitored within in the community setting. Has a result mum ended up on critically unwell on resus because the furosemide had 'dried her out' and she was diagnosed with Hyponatremia (furosemide played a role ), it would be worth your dad having blood tests just to see what the sodium and creatine are whilst he is on furosemide and ensure he is monitored whilst on it.
All the best. You do need to fight your corner and insist with the doctors to ensure nothing has been overlooked. I have found that the older the patient the less effort is given to them and that goes against medicine is about.
Thanks for this adviceand for sharing your story. I wasn't aware of the Furosemide so will keep this in mind.
His serum creatinine was within range However eGFR was 65 and normal range is above 89. He has not had a kidney scan recently. I do remember that there was a small growth on kidney a few years ago but doctors were not overly concerned at the time but you reminded me to look into this.
If the creatinine range is good how is the estimated GFR is slightly lower?
I would ensure the doctors have given you the correct range. Again I think the standard way to estimate GFR is a blood test that measures creatinine.
Water is always a good way to hydrate the kidneys and keep them well but I bear in mind your dad is on Furosemide. IS that long term use? Or just until the oedema is resolved to some degree?
For the Apixban I absolutely believe Haematology input is essential. It could be Apixban is not right for your dad and other alternatives they could discuss with you both.
Our parents look to us as they get older to navigate their health care. Sdo not be afraid to insist these things are done ignorer to get to the bottom of these things. My Mum has HFpEF which is right side chart failure with pulmonary hypertension. There are ways for patients to live with their conditions comfortably. But I have found I have had to really insist on the right procedures being done to get where we are.
I think we have a system if epistemic injustice within the healthcare system.
Thanks. I agree with you and I will do my best to ensure he gets the right care.
From what I understand Serum creatinine can be within the normal range while eGFR is lower because eGFR takes into account factors like age, sex, and muscle mass. My dad's muscle mass is low and that's mainly due to dealing with psoriatic arthritis for most of his adult life. However I will ask the doctor as well .
His furosemide is only until the oedema is resolved. At least that's what I'm hoping for. I need to take advice on this.
I will ask for Haematologist referral or see one privately otherwise.
I wish there was a way to get a multidisciplinary team support for people with several comorbidities.
There is in a hospital setting. they have MDT meetings. Outside the hospital have you got something like - Hospital at Home?
My mum spent several weeks in hospitla due to a hospital acquired infection. However what had took in into hoositl Ian the first place could have been done under hospital at home. When mum was discharged she wa suede their care until she wa better. Their teams have dieticians, physios, nurses, doctors from different specialities , etc.
Ok that's interesting. I will have to ask again on how they assessed that he is iron deficient. They always do a ferritin check and FBC check. They have also put him on ferrous sulphate supplements.
Looks like it may be helpful to consult a Haemotologist.
i’m so sorry it’s very upsetting. In your dad‘s case maybe he should look into ablation and the watchmen to get off medications since he is not tolerating the anticoagulant. From the statistics changing to warfarin probably won’t help because research shows that causes even more bleeding in people who are prone to bleeding. We are so caught between a rock and a hard place with a superation. All the choices are difficult.. I wish him all the best. I’m so sorry that you’re going through this.
Thank you. I have looked at both options. Although watchman looked promising, I was surprised by comments that I saw on this forum. I'm worried about the risk of leakage without being on anticoagulants.
I will discuss ablation with EP. There are different types and the newest type is Pulse Field Ablation. However I understand it's not always successful and may have to be repeated and may even fail 2nd time. Its invasive but many patients have lived without AF for a few years after ablation so it's worth a try.
I know all of our choices are so difficult. I know that the pulse field ablation is supposed to be safer in regard to complications such as puncturing the esophagus by accident or the heart itself. One thing to be aware of. Is that if your dad has atrial fibrillation and atrial flutter as I do, my EP said, the pulse field ablation only treats atrial fibrillation. He said he’d another type for the a flutter. I’ve been hesitant to go forward for all of your reasons because many people need multiple ones, etc. and be aware that having the ablation doesn’t always get you off the blood thinner. It depends on the doctors philosophy, and if you are free of atrial fibrillation for a certain amount of time that they believe is OK. Some doctors don’t believe you should get off even if they do an ablation. So check this all out with your EP. If he does qualify for the half dose, maybe you can see if that stops the bleeding if the EP thinks it would be ok. I don’t qualify for it, but I’m on the half dose for a year now I am just way too scared of the full dose and I didn’t tolerate the full dose well. Also, with the newer anticoagulants, there’s no way to check the dosing like you can with warfarin, so the doctors are just guessing that it’s enough or not too much all the best.
Thanks that's great advice. I really appreciate this as it helps to make an informed decision. Also interesting fact on how it's not possible to check appropriate dose with newer anticoags.
I am not medically trained, but I have noted no-one has so far referred to your father's weight at 59kg, which is one of the criteria (2 of 3 required) needed for low-dose apixaban, thus ...
Apixaban dosage
5 mg twice daily, alternatively 2.5 mg twice daily, reduced dose used in patients with at least two of the following characteristics: age 80 years and over, body-weight 60 kg or less, or serum creatinine 133 micromol/litre and over.
Now I realise you are already considering other health conditions as possible causes of your father's "unexplained bleeding from Apixaban for many years", but "excessive bleeding" is one of the reasons the low-dose option exists for certain patients.
I do have this research which does favour full dose rather than low-dose. Low-dose apixaban in this study gave higher stroke risks without decreasing the bleed risks, but the low-dose option must still be appropriate for a particular cohort of patients.
Effectiveness and safety of low-dose versus standard-dose rivaroxaban and apixaban in patients with atrial fibrillation:
I hit my head on a wall mounted boiler in my garage long before I was ever on Apixaban (maybe 40 years) and it bled alarmingly. The Dr said it was because there are a lot of veins over your head with no muscle or fat to absorbed the blow so it was to be expected, just from the way the body was built. Shirt was soaked in blood but once is scabbed over it stopped. Even on Apixaban I find wounds scab over, just takes a bit longer. I'm over 80.
Just an update. My dad has been asked to take omeprazole by EP until we see the gastroenterologist. On the positive side his ferritin and haemoglobin are rising since he started taking non acidic form of vitamin c.
EP also suggested adding Bisoprolol with his Digoxin dose to try to control his high heart rate as he is in persistent AF. He has been put on waiting list for cardioversion to get heart back into sinus rythm.
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and once a week ago when I fell in the kitchen hitting my chin on the granite worktop - OWWWW breaking a couple of teeth and cutting the outside of my chin. It kept weeping blood for about an hour - not much but it just annoyed me - the inside of my mouth stopped bleeding quickly so as the wound seal was near it's expiry date I used some. It comes in small tubes and once a tube is opened it should either all be used immediatley or thrown. The pack I bought had 3 of the small tubes so now two used and one left that I doubt I will use before the expiry date - ha, just checked and expiry date is tomorrow - though I would probably use if necessary in the next couple of months. If wounded and bleeding will not stop then obviously one would need to go to a clinic or A&E. You may feel this might give you and your Dad a better sense of confidence if you had some of this? We also have butterfly strips and all sorts of things for closing wounds as I have such wonderful adventures in the garden - fell 30ft through dense trees once when I was attempting to cut the tops down narrowly missing being skewered by the loppers as they fell after me but landed quite softly and didn't even cut myself as the trees slowed my descent and cushioned me - also fell off ladder because I was wearing varifocals and couldn't see the last 2 steps when looking down as looking through the reading part of the glasses. I am commonly known as "Dangerous Des" 
Bleeding Nuisance
Anticoagulant and tooth extraction 
Support and Control
Bleeding experience
