Anticoagulation considerations for newly diagnosed AF members

This is a post particularly for newly diagnosed members who maybe concerned at some of things they may have read recently about the increased risk of bleeding due to taking anticoagulants. I’m not medically trained, nor (as far as I know) are any of the contributors featured in the links below but what they say will hopefully improve your understanding of what is an extremely complex and important subject.

AF and other Arrhythmias tend to be complex conditions which can affect people in so many different ways. It’s therefore impossible to come up with any simple solutions for anything and everything the condition can throw at you. In other words, there are no “one size fits all” solutions to treating any Arrhythmia. In addition, because this is an international forum, different countries have their own methods of delivering medical care which often creates differences in opinions and advice offered by members and this can further complicate treatment considerations because not all treatments are easily accessible everywhere.

Generally, in the UK when an Arrhythmia patient is diagnosed, the Doctor has 4 main objectives to consider:

1. Heart rate control - If the heart rate remains too fast for too long it can ultimately result in heart failure. Whilst that sounds bad, it is treatable but obviously best avoided. Similarly, but not so common, slow heart rates also need treatment but for different reasons. Treatment (normally medication) is prescribed to get the heart rate into normal range, ie 60/100 bpm.

2. Assessing the risk of stroke - it is a well known fact that AF will increase the risk of having a serious stroke. The degree by which this risk increases is determined for each patient using a system known as CHADsVASC. For those not familiar with this process, there is plenty of information on the AF website or alternatively, using Google. The system provides every patient with a score and depending on that score, a decision needs to be made as to whether or not the patient should be anti-coagulated. Whilst ideally the patient should participate in the decision process, this is normally assessed almost immediately after diagnosis therefore it is unlikely that the patient will be in a position to contribute much to the process. Unless anticoagulants are prescribed for short term use, i.e. to support a procedure such as a cardioversion or an ablation, they should normally be taken for life regardless of any treatment which might and hopefully will at some stage, control symptoms. It is generally understood that there is no finite cure for AF so symptoms can return at anytime. If symptoms return after treatments such as an ablation, they are often significantly less obvious and a patient may even be unaware that AF has returned, so always discuss this with your doctor and follow the advice given. Unfortunately, a stroke will occur with little or no warning and needs immediate medical attention to minimise any long term effects. If you live within close vicinity to an A&E facility, if it’s possible it might be better to be taken to the hospital by car rather than risk waiting for an ambulance if you are told there could be a delay.

3. Assessing the risk of bleeding - if anticoagulants are prescribed they will increase the risk of bleeding. As far as we know, they do not, in themselves cause a spontaneous bleed, but if a patient experiences ANY form of trauma or internal bleeding perhaps caused by an ulcer, it is likely to take longer to stem the bleeding. The system for assessing this risk is known as HAS-BLED and is a similar process to CHADsVASC. Unless an AF patient, or a close family relative has a history of bleeding, medics suggest the risk of stroke outweighs the risk of bleeding. Unlike the risk of stroke, you normally have to actually experience “something” to cause it to happen. This is why it is important to take sensible precautions to minimise the risk but as the majority of patients prescribed anticoagulants are 65+, I guess this is no bad thing anyway. If you have recently been prescribed an anticoagulant, it is likely to be one of the DOACs ie Apixaban, Edoxaban, Rivaroxaban or Dabigatran. These operate in a different way to Warfarin which was more commonly prescribed pre-pandemic. All anticoagulants are good at what they do, but as I understand it, DOACs tend to offer very slightly better protection against bleeds than Warfarin and Apixaban is very marginally deemed as being the better DOAC but that is all very speculative. Personally, I take Apixaban and have done for several years and had no problems. Normal cuts and scrapes really do not take much longer to heal than before. Bruises caused by knocks seem to fade as normal and I have had no unaccountable bruises. I am a fairly active 76 year old and continue to do all the things I have always done but more carefully and using protective clothing when necessary. Whilst I don’t partake in contact sports, ride horses or ski, I feel comfortable doing the things I want to do but patients should always follow guidance from your medics. Read the links below, you should find the comments helpful and interesting and will hopefully help to allay your concerns regarding the risk of bleeding.

4. Symptom control - often, but not always, AF brings with it a number of different symptoms and if you have been recently diagnosed, you will no doubt be familiar with some or all of the more normal ones. In the UK, under the NHS, doctors will follow a set of procedures which are laid down and monitored by NICE. This is a very complex process which often involves a combination of tests, procedures and medications which are designed to help control AF symptoms in order that over time, the patient can lead a near normal life. None of this is easy or quick and more specific information is available on the AF Associations website.

I hope you find this helpful, no doubt it will encourage other members to add their thoughts and experiences but it is always important to follow the advice of your doctor. Here in the UK, doctors will follow the NHS guidelines for treatment as defined by NICE. I have know idea how treatments are determined in other countries. Please read the comments in the links below and normally, there should be a list of related posts featured on this page, so take a look at those too as they can only add to your knowledge and understanding.

healthunlocked.com/afassoci...

Please be aware that as is often the case when dealing difficult issues, admin decided that access to this post was best stopped but the comments regarding anticoagulation are still worth considering

healthunlocked.com/afassoci...

Finally, nobody wants to take medication but most of us accept that where AF is concerned, taking prescribed medication is almost always better than the alternative. There is always research into new modified treatments and of course, the advances in technology have been and will continue to be incredible. There will soon be trials in the US to explore the possibilities of reducing the need for some AF patients to take anticoagulants on a regular basis but this will take at least 5 years to complete. If, as we all hope this research is successful in its findings, it will probably take even longer before any changes occur in the UK because the Medicines and Healthcare Products and Regulatory Agency (MHRA) exists to make sure that medicines and medical devices work properly and meet the required standards of safety, quality and efficacy. It also assesses all new medicines before they can be sold in the UK and continues to monitor the safety of medicines once licensed. I think we can all be assured that the AF Association will be quick to make members aware of any developments in this important area, as and when they occur.

I hope that all you newly diagnosed members will find this information helpful and encourage you to ask questions because members are always willing to share their experiences in order that you can begin your AF journey with more confidence and understanding than we did. Once knowledge and a better understanding of anticoagulation has been acquired, newly diagnosed patients are better placed to discuss their concerns directly with their doctors

Of course in time, patients conditions will change and hopefully improve as will their knowledge and understanding as their treatment plans evolve but the principles referred to in this post are unlikely to change significantly anytime soon in the UK due to the reasons mentioned above. Most are happy to follow the advice given by their medics but there is nothing to stop any patient from ignoring this advice but I assume that they are then responsible for the outcome of their actions.

Also remember, the AF Association’s Patient Services Team are always able to offer help and assistance regarding this important subject…….

[Jay10]

Thank you Flapjack for that very helpful informative email.

Take care, Jackie

[Threecats]

My goodness FJ, that’s a magnum opus you’ve written! I’ve no doubt it will be very helpful to a lot of the newly diagnosed when starting their AF journey.

Interestingly, I had a review with the pharmacist at my local surgery yesterday who said that they don’t prescribe anti-coagulation for anyone with AF who only scores one point on ChadsVasc, unless they were due to undergo a procedure such as a cardioversion. It’s considered the, admittedly, very low risk of the drug inducing a spontaneous bleed, particularly an intracranial one, is deemed greater than the the chance of having a stroke at that score level, apparently.

[Hidden in reply to Threecats]

Yes, most of the NHS speakers I have heard have said 0 to 1 borderline benefits, 1 to 2 should be careful considered and 2 + generally recommended. Neither Chads nor HASBLED is a recognised as a precise science by any means but if anticoagulants have been prescribed in the UK, the chances are they are best taken. If for no other reason, NHS GP’s, cardiologists and EP’s tend not to prescribe unless they think it is best for the patient……

[Omniscient1 in reply to Hidden]

My surgery definitely does prescribe when the chads score is >0. I guess they're all different in how they approach things (and level of knowledge)

[Threecats in reply to Hidden]

Of course FJ, I’m not suggesting for a moment that folk shouldn’t take their prescribed medications and I don’t think my reply suggests anyone should do that.

It was, rather, that there has been the odd post on the forum where someone was concerned that they weren’t on ACs even though diagnosed with AF. In your original post you say “As far as we know, they do not, in themselves cause a spontaneous bleed” but that isn’t entirely correct, if I may say. They do come with an admittedly very low risk of doing that, hence the ChadsVasc assessment is carried out to establish whether the risk of a stroke is greater than the risk posed by the ACs themselves. If the risk were merely that you might bleed more if you injure yourself then ACs would be given as a matter of course to anyone diagnosed with AF , along with instructions to be careful! The fact that the small risk of a spontaneous bleed exists is the reason why we have the ChadsVasc system in the first place, surely.

I do agree that nothing in this AF business is a precise science!

[Hidden in reply to Threecats]

Thanks for your reply. I thought I was agreeing with your first answer because as you say, apart from when having a CV or an Ablation, there are many people with AF who do not to normally need to be prescribed and therefore take anticoagulants. With regard to spontaneous bleeding, there may be different views about what this means in terms of definition. The Doctor who is responsible for training GP’s in our Trust said at one of the Surrey ASG meetings that internal bleeds are unlikely to occur just because you are taking anticoagulants. It is generally caused by some physical change brought about by trauma caused by an accident or a change in the anatomy but it is unlikely to actually have been caused by the anticoagulant but that it could have an impact on the potential outcome.

I believe the AFA are monitoring this post to ensure that newly diagnosed AF patients are not misinformed so no doubt they may have something to add to ensure clarity……..

[Threecats in reply to Hidden]

The caveats mentioned by the Doctor you refer to are interesting, thank you. When I first went into persistent AF I consulted with an EP privately as anti-coagulation was one of the things that concerned me, given the change in my AF status. He explained that the chance of me having a bleed from the Ac was greater than the risk of a stroke at this stage but obviously this will change with age or if I develop other risk factors. He didn’t mention either of the caveats you’ve set out above - he was keeping it short, it seems!

[julielj in reply to Hidden]

It is very interesting what you say. I was diagnosed with AF 6 years ago when taken in to hospital. I recently had a medication review and yearly blood test with a new Doctor at my surgery. The advice was continue to take the prescribed Digoxin and Bisoprolol. Three weeks later I get a call from the practice manager of the surgery to say that she {the practice manager) had reviewed my notes and has anybody ever talked to me about blood thinners. I answered no. She said I needed to make another appointment with Doctor to do so, otherwise the practice has not done the best they can for me in their care. No scores have ever been mentioned on any scale ever to me (that's not to say they have not been done). The appointment is next week. I feel let down by the Doctor and am now researching all the new types of anticoagulants myself in detail ahead of the appointment for that discussion. I have no idea why this discussion has never been bought up before. I was advised 6 years ago on diagnosis to take a small dispersible asprin every day. Can I ask, do you think a GP should be making this decision or a cardiologist? I live in Kent in the UK. I have never seen a cardiologist ever, just in the early days of diagnosis just a cardiac nurse who apparently reports back to the specialist. I also appreciate that some parts of the UK have better services than others, I am finding this site very helpful. Thank you.

[Hidden in reply to julielj]

It’s fairly easy to assess your stroke risk by simply googling CHADsVASC and establishing the score which applies to you. It’s not a precise science but if you are lucky enough to have a zero score then generally there is no need for anticoagulants. If it’s 1 they should be considered but for 2 or more they are normally advised. There is a similar test to assess the risk of bleeding known as HASBLED. The general thinking is that unless there you or a close family member who has experienced internal bleeding, for most people the risk of stroke outweighs the risk of bleeding but those involved in high risk lifestyle pursuits need to be cautious.

I was lucky, my surgery was on the ball when I was diagnosed back in 2014 and warfarin was prescribed immediately AF was confirmed and about 2 years later it was agreed that I could change to Apixaban which works well for me. From what we hear, most surgeries prescribe Edoxaban and most here seem happy with on it.

Unfortunately, patient care varies enormously around the country but patients who research the condition and are better informed about treatments tend to engage more with their GP’s but it is a bit of a lottery. I guess the clue is in the title, a General Practitioner cannot possibly have a depth of knowledge and understanding that most Specialists acquire but the NICE guidelines which GP’s “should” follow are quite specific so your GP might just surprise you! If, after you appointment you end up with more questions than answers then request a referral. Unfortunately that could take months, particularly if your symptoms are reasonably well controlled so if it’s possible, think about a private consultation but first, see how you get on with your GP…….Good luck.

[Hidden in reply to Threecats]

Having just got back to our hotel after an afternoon in Cheddar, I googled intracranial haemorrhage and it confirms that it is generally caused by having hypertension which adds a point to the Chads score even if it is controlled with medication 🙁

[Threecats in reply to Hidden]

Although the NHS website for the various DOACs does give black box warnings with regard to spontaneous bleeds …..

Anyway, enough of this to and fro , we’ll have to agree to disagree on this one, I think and besides, you’re on holiday😊 You’ve certainly chosen a good week weather-wise. I hope you and Mrs FJ enjoy your time in Cheddar

[Hidden in reply to Threecats]

I’m not sure how many new or recently diagnosed AF patients join this forum each week but it’s important that the information provided to help them come to terms with their condition is accurate and not in any way misleading. I have therefore made TracyAdmin aware of your comments so that they can determine whether or not this post should be amended…….

[Threecats in reply to Hidden]

Well yes, that was my concern and why I queried that aspect of your post in the first place. If an amendment is required for clarity it would only be a minor one to an otherwise very informative and helpful post.

[ozziebob in reply to Hidden]

Hypertension was not offered as a possible cause by any of the multiple neurosurgeons I encountered following my unexplained chronic bilateral subdural haematomas in late 2016. Nor do I have other comorbidities. So unless you can suggest another source of my intracranial bleeding then I will remain very reluctant to begin the Apixaban I have been recommended. Just saying. It is a difficult personal decision for me.

[Hidden in reply to ozziebob]

As you know ozziebob, although I sympathise greatly with your dilemma, I am not medically trained so cannot comment or advise on any individual’s personal treatment.

Can I suggest that you follow up on TracyAdmin’s suggestion to contact the AF Association Patients Services Team using either the link, email address or phone number featured in her replies below.

When I googled chronic bilateral subdural haematomas it indicated that they are caused by a head injury so I assume that maybe why hypertension wasn’t mentioned……..

[Plastow48]

Thanks for your report. Has given me more confidence of how to live with AF. Jenny

[TracyAdmin Partner]

Thank you for your message, a good concise explanation to offer support to new members of the Forum. If anyone has any questions, need any advice or information, our Patient Services Team are here to help!

heartrhythmalliance.org/afa...

[meadfoot]

great post.

[Fight-the-good-fight]

Thank you Flapjack,

As someone who has recently been diagnosed with PAF I found your post extremely helpful and informative.

You only ever have a short window of time with the medical profession to absorb what they are telling you and to ask questions.

I eat sensibly, don’t drink alcohol, I exercise I am not overweight; however, my family history, my high blood pressure and age (64) female - give me a CHAD score of 2+ hence the anticoagulants and beta-blockers.

I am trying to manage the side effects, headaches, dizziness, fatigue. I have been on the meds for a month and thought by now side effects would have subsided.

Have a call with my GP this morning to discuss further.

This forum is very reassuring and helpful.

[JOY2THEWORLD49 in reply to Fight-the-good-fight]

Hi

Headacxhes, dizziness and fatigue!

That's not right if you didn't have these before being diagnosed.

After the stroke which awoke me @ 2am, I had a sore head and was so fatigued that after the bathroom visit I went back to sleep. I didn't look in the mirror so until I awoke at 5.30am did I know that I had had one.

On no meds except B12 deficiency so took a nugget 2 days a week.

It was the 4th day diagnosis of shadow of my thyroid with cancer? during carotid arteries" scan the scanner checked out my thyroid. So blood clot came formed from my heart and got stuck in my left frontal brain lobe. Formed by AF.

It was a rather 'bad' year my 70th year.

Dizziness can come from too low or high BP or H/R.

Fatigue comes from above and AF or your beta blocker.

Do get your Dr or H/Specialist to do an ECHO & ECG and a 24-hr heart monitor.

You need to get your BP and H/R controlled.

cheers JOY. 74 (NZ)

[TracyAdmin Partner in reply to Fight-the-good-fight]

Welcome to the Forum, it can often be an anxious time upon first diagnosis, there is so much to learn about and remember. The Patient Services Team are here to offer support and advice, so if you have any questions or need any guidance, feel free to call on [phone] or via email [e-mail]

Take care

TracyAdmin

[wilsond]

Well said Flapjack,exactly right

[Popepaul]

A very informative and helpful post from Flapjack.

[JOY2THEWORLD49]

Hi FlapaJack

Listed are all the DOACs. Trust you only take your Warfarin!!!!!

Delving into research and DOACS, I read that they should not be given when the patient has CANCER.

But I was given the lower dose of PRADAXA probably as I was being biopsied for thyroid cancer.

But I found the difference of 110mg nd 150mg both twice a day helped my energy level.

And bringing B12 up to 700 level even better.

Folks hate meds so they need to weigh up the risks.

I have been on PRADAXA almost 4 years now.

I believe all folks should take an interest in their health and research as this helps you with your ed dosage and the lesser dose that manages your symptoms the better.

Be patient you AFers and go to a private Heart Specialist is your H/R or BP is not controlled as I was for 2 years 3 months. Metoprolol now a no no - symptoms rapid H/R 187 avg Day withbreathlessness on exertion, no energy but fatigue, sweating and pauses at night. Moved onto Biscoprolol H/R 156 avg Day. Went to a private Heart Specialist who introduced CCB Diltiazem a Calcium Channel Blocker. 120mg less than 1/2 full dose AM with a low dose Bisoprolol 2.5 at night.

I can happily say I am controlled H/R and BP with H/R falling after a year on this regime.

110-124. /. 69. BP with 60s H/R Day avge at rest. With energy growing.

And I have uppered my B12 level to 700 through the 1000ug sublingual Solgar nugget - up to 3 days per week.

I should hope we Afers all get there as quickly as possible. CONTROL is the optimum word. Fight for your right to help your heart settle with.without AF.

cheri JOY. 74. (NZ)

[Camelia23]

Thanks Flapjack; although I'm not a newbie it's always useful to have a reminder of the treatment necessary in AF.

[Cavalierrubie]

Your post is absolutely brilliant Flapjack., l have had AF for five years and what l would have given to read that when l was first diagnosed. I had never heard of AF and no one explained it properly, not even the doctor who diagnosed it. I think it was a case that they see it so often it is common to them. I was absolutely petrified and it made my AF much worse for the first few months as my anxiety went through the roof. It is extremely thoughtful of you to take the time to post this for others. Thank you Flapjack you are a star.

[whats]

I had unbearable itching on apixoban. Seems to be a unique reaction. And I normally tolerate drugs well, and nothing else makes me itch like that. I do take a half pill when I'm in a fib tho I don't think that's effective, at least I don't itch.

[Hidden in reply to whats]

I really think you should talk to your Doctor and consider trying an alternative. Folks nearing their 80’s or are under a certain weight are encouraged to take half doses but if this doesn’t apply, you may be taking a far greater risk than dealing with an itch no matter how bad it affects you…..