Apaxiban and side effects: Hi guys, I have... - AF Association

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Apaxiban and side effects

Spangle14
Spangle14

Hi guys, I have posted about this before, so sorry for pestering you again! It's re the dreaded anticoagulants I have been prescribed - I have got myself in a right pickle about taking them, especially having read some of the possible and scary side effects. Some of you did offer some advice about this before but I have now come to the conclusion that I have a phobia around taking medication. I am fully aware of the stroke risk and I know it probably seems daft to even question taking them. I feel like I'm between the devil and the deep blue sea. I have a CHADS score of 2 and have been prescribed Apaxiban. Can I just ask if any of you put there have experienced any side effects on this drug? Thank you

134 Replies
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I generally don't tolerate meds very well as I have metabolism problems but I can honestly say that I've had no side effects at all with Apixaban, absolutely nothing. Personally I think taking a couple of tiny pills a day is preferably to having a stroke !

Spangle14
Spangle14 in reply to bantam12

Yes, bantam12 I fully agree that taking a couple of tiny pills is preferable to a stroke - if those pills do not cause any major side effects. It is a phobia, I'm afraid, and as such, has no logical basis. It is really good to hear that you haven't had any side effects so I will just have to bite the bullet and hope that I'm the same. Thank you

BRHow
BRHow in reply to Spangle14

Dude. I’m the same way. I had the bottle of pills and it took me a week before I started. I actually found out who the area manager was from the drug co. Who manages all the Xarelto sales. I called him and asked him 100 questions. I spoke to at least 3-4 family members who are doctors and asked them a ton of questions. I’m glad I decided to take it. No issues.

I sympathise with you not wanting to take drugs I am the same have taken very few and hadn’t gone well for me. Also in a similar position in that I have a score of 2 and had my first ( so far only ) episode of AF at the end of July . Am on aspirin at present don’t want to take blood thinners either BUT if I have another episode I have told myself I will have to take blood thinners at that point . I don’t know what your bleeding issues are it sounds like you have taken expert advice and been told the drugs still aren’t contraindicated . I have read on here of people who are fine on them and people who have side effects and I guess there’s no way of knowing which one we are until we take them no matter anyone else’s experiences . But I really do empathise

Spangle14
Spangle14 in reply to Peony4575

Thank you Peony4575. I had a long discussion with my GP the other day - she thinks I'm mad not to take them and I do get that, given the risks. I am going to have to suck them and see, I guess (though not literally!). Can I just ask if you were told to take aspirin, or you opted to do so because you didn't want to take the blood thinners?

Ginshu
Ginshu in reply to Spangle14

I had a real problem with taking It .What convinced me A visit to a nursing home to se a friend .There were alot of people there who had strokes....if this helps to not go down that road I take it...I want to hug them all it was so sad see.

Spangle14
Spangle14 in reply to Ginshu

Yes, a stroke truly petrifies me!

Peony4575
Peony4575 in reply to Spangle14

Of course you can. I put myself on aspirin a decade or so ago when the fashion in medicine was that aspirin was a great lifesaver so already on it

LarryJ60
LarryJ60 in reply to Spangle14

Hi, Folks often forget that aspirin is a medication too and has the potential for side effects like stomach bleeds when taken long term. These newer anticoagulants are safer than older meds like coumadin, with less complications, and are most effective. Strokes can be deadly and at the very least the disability is devastating financially and at any other level you can think of. We are fortunate to live in an age when we have the tools to live healthier and longer. My family is prone to afib related strokes and I’ve seen the devastation they can cause. I am grateful to live in an age where we have the tools. The consequences of not taking apixiban far outweigh the risks of taking it. I’ve been on apixiban and similar anticoagulants for over 10 years and have had absolutely no issues with apixiban as it is simply the best of the bunch at preventing long term serious disability which scares me FAR more.

CDreamer
CDreamer in reply to Spangle14

Aspirin does nothing to prevent AF induced stroke as it’s an anti-platelet, not anti-coagulant. Please do not try taking asprin! Taking daily aspirin is not recommended as it can cause stomach ulcers and bleeding.

I’ve been on Apixaban for 7 years with no side effects and seems to be the most benign of all of the anti-coagulants. I cannot take many medications and am happy on Apixaban.

Treschere
Treschere in reply to CDreamer

I agree CDreamer, I was put on Aspirin temporarily when I had 1st PAF episode and changed to Apixaban with the 2nd, far less bruising than the Aspirin gave me.Plus I don't have any side effects either.

Nerja2012
Nerja2012 in reply to Treschere

Treschere, I have P A F, could I ask you how often your episodes occur please.

Spangle14
Spangle14 in reply to Nerja2012

Touch wood, not that frequently atm - I have had two quite big episodes (about 8 months apart) and two very short-lived ones more recently - to my knowledge, lasted under 10m

Nerja2012
Nerja2012 in reply to Spangle14

Thanks for that, mine about 10 months apart usually last 5 or so hours, taking Apixiban 😠 seems it's the same treatment whether PAF or not.

Spangle14
Spangle14 in reply to Nerja2012

My first episode lasted a couple of hours but the second lasted much longer - I think around 5 hours. The other 2, that I know of, have been much more short-lived and yes, they do seem to prescribe anticoagulants regardless of the type of afib

Treschere
Treschere in reply to Nerja2012

Hi Nerja2012 they seem to come together for a few days or so and then nothing for several weeks. I was diagnosed back in July after two A and E admissions and then there was a further one at the end of August, since then no hospital admins. I started my medication after the last admin and since then as I say some days I have nothing at all and then at another time a couple of days when I know it is playing up. i had four episodes in November, a couple in December and so far none in January. I do have sinus ectopics though which are not really a problem.

Spangle14
Spangle14 in reply to Treschere

It's strange isn't it, I find it baffling how random they can be and I'm sure the docs do too. They do say that there can be triggers like alcohol, caffeine, certain foods....but that can be different for different individuals. Personally, I have given up alcohol just in case, was never a big drinker but certainly a regular one. I have heard that alcohol is very toxic for the heart so thought it might be worth a try. Have also cut down on fats and sugars. We shall see......

Nerja2012
Nerja2012 in reply to Spangle14

My GP said as mine are so infrequent anticoagulation is a very grey area. There are 2 chads scores, on one I score 3 and the other one a 1, very confusing.

Spangle14
Spangle14 in reply to Nerja2012

Are you sure that one isn't a HAS-BLED score? They sometimes give you both - the Chads gives the stroke risk and the hasbled gives the bleed risk. I have a Chads score of 2 and a hasbled score of 1 which means my stroke risk outweighs my risk of a bleed

Nerja2012
Nerja2012 in reply to Spangle14

No I've seen chads score 2 and chads 2 - vascular , to be honest I haven't got a clue which applys to me.

Spangle14
Spangle14 in reply to Nerja2012

Oooooh, not sure, maybe you need clarification

Nerja2012
Nerja2012 in reply to Spangle14

Its all a bit baffling I must admit but thanks for the input.

Treschere
Treschere in reply to Spangle14

I think my issues in Nov where potentially triggered by Tonic Water which I was drinking as I had some cramp which I get occasionally

Spangle14
Spangle14 in reply to Treschere

Years ago, a cardiologist told me that tonic water can affect the heart

Tapanac
Tapanac in reply to Spangle14

aspirin and apixaban are completely different - apixaban are anti-coagulants not blood thinners. Also are the kindest to the stomach and brain apparently. Aspirin could, but not necessarily, cause ulcers and stomach problems and are to do with platelets.

BobJ52
BobJ52 in reply to Peony4575

Hi I have been on Apieban since last October with no issues at all. I am 66 and diabetic and definitely don’t want to play roulette with my health risking a stroke

Peony4575
Peony4575 in reply to BobJ52

Good for you

C66t
C66t in reply to Peony4575

Hi Peony,who prescribed Aspirin for you? Having chad score of 2 it doesnt give protection against stroke. Check stopafib.org. best wishes.

Peony4575
Peony4575 in reply to C66t

Hi thank you for being concerned. No one prescribed it I was already in it had been taking myself. Have only had one AF episode to date triggered by an NSAID upsetting my electrolyte balance . If I get another episode I will take Edoxaban but not going to take it on the basis of the one episode

Maggimunro
Maggimunro in reply to Peony4575

Hi PeonyI would question the decision to take aspirin as well as an anticoagulant.

There is a recent post on this deadly duo.

Peony4575
Peony4575 in reply to Maggimunro

Hi many thanks for that . I am on aspirin I have never taken an anti coagulant but I appreciate your trying to look out for me

I have a CHA2DS2-VASc score of 2 (for being female and 66). And I am not taking apixaban or any other anticoagulant, despite the recommendation to do so. I feel for me this is the best choice. I have done a certain amount of reading and thinking about this and weighing of the pros and cons (and there are both pros and cons to anticoagulants, which cardiologists will not admit).

Everyone needs to make their own choice of course. But just wanted you to know you are not alone in your concern and hesitation.

Something rarely mentioned by cardiologists is the numerous tiny microbleeds in brain resulting from ongoing anti-coagulant use, and the relationship this may have later to dementia or other cognitive declines that will by then simply be attributed to 'old age' but could have quite possibly been avoided by avoiding years of anti-coagulant. Yes, a stroke is a bad thing to have. I don't believe that will happen to me at my very low risk level. In fact I believe in Europe, anticoagulant isn't even recommend for women with score of 2. Whereas the microbleeds in brain are a given with continuous anti-coagulation.

I agree with what you say. People on here continuously mention their Chad2DS2-VASc score but never once mention their HAS-BLED score the risk of having a major bleed in AF . My cardiologist didn’t mention it to me. You assume he did a mental calculation but didn’t mention it to me . Anymore than it was mentioned that beta blockers increase your risk of getting type 2 diabetes by up to 50% and statins have a similar effect . Or that commonly prescribed and OTC NSAIDs increase your risk of developing AF by up to 70% . And a lot of , particularly GPS don’t spend ther time reading serious medical journals. No one pours money into trials to uncover side effects. Doctors are reluctant to acknowledge symptoms can be attributed to the drug they are taking, I have heard members on here suggest to other members their side effects must be psychological because they themselves don’t get them. If AF begets AF drug taking begets drug taking . And patients are rarely aware of the real risk benefit ratio unless they do the digging themselves . It takes decades for side effects to become noticeable across a population usually , and the original trials are short relative to a drug you are taking for life

Exactly! Very well said Peony. Agree 100%.

Every anticoagulants has gone through extensive clinical trials where the side effects and effectiveness is documented.After all the clinical trials are done over many years,the evidence is placed to the appropriate licensing authorities to decide if the particular drug is effective and the side effects.The balance of efficacy and side effects are always taken into consideration.All the costs of finding the side effects and efficacy are the pharmaceutical companies.It is unhelpful and wrong to say people do not fund side effects.That is how a new drug is evaluated.After a new drug is licensed,their are systems in place to evaluate ( post marketing ) side effects by the particular pharmaceutical company and by the licensing authority.

Thank you for that lesson . I worked for pharmaceutical companies for more than 20 years. Lots of side effects take decades to become recognised. Benzodiazepines is an obvious example

You are absolutely right,some side effects take decades to become recognised,however the vast majority of side effects are picked up in the clinical trials and post marketing.I also worked in the pharmaceutical industry for nearly forty years.I am sorry if it came over as a lesson,I was only with my experience trying to help.

Pharmaceutical companies move heaven and earth to hide the side effects of their drugs that they usually know about from the get go ie the animal trials. The various judicial processes and scandals prove this. I they can get through the patent period before the negative side becomes too apparent they are well content.

I must respond to this misinformation.First of all,it is not in their interest to move heaven and earth to hide the side effects of their drugs.Secondly you mention animal trials.If you were familiar with the how a drug is tested.No 1 is that a side effect which you can get in animals,may not happen in humans.Also,trials start in animals,then progress to humans for dosages and side effects,then if everything is o.k,progression to further trials in humans.All of this data is shared with the licensing authority to see if the drug can be licensed for use.I speak from nearly 40 years in the pharmaceutical industry.To actually say that they get through the patent period before the negative side becomes too apparent is wrong .

Vioxx , Avandia , Mediator , Depakine, Seroxat, FQ antibiotics J&J talc , lying to doctors about opiate dependence in chronic pain patients etc etc. The courts have slammed pharmaceutical companies and issued massive fines for their shall we say " lack of transparence" . Billions in fines. And yes it is in their interests to hide the side effects of their drugs or make out that these side effects are so rare virtually nobody gets them because that way they can make more money from selling them. There is a typo error in my post. I meant if they can get through the time the drug is under patent they will be content. You cannot be unaware of the cases in the courts that show up drug company malpractice. And there are plenty of books written by insider whistle blowers about how this is just business as usual. Companies continue to push drugs that they know are harming people for one reason only - profit.

Thalidomide, Primodos not to mention saying Benzodiazepines were not addictive for decades

I have not heard of Primodos . What's that?

Primodos massive scandal spanning 40 years. Hormone based pregnancy test equivalent to taking 40 contraceptive pills caused miscarriage and birth deformities . In 2017 sky news revealed how documents were destroyed and information was withheld . Should have been removed from market 1967 when concerns first raised stayed on until 1978 finally some sort of justice in 2018. Doesn’t show the drug company or the regulators in a good light worth a read

That's the problem . One expects on past performance that the drug companies will lie and cheat but unfortunately investigations into some of these scandals have shown complacency if not down right complicity on the part of the regulators. That was certainly the case with the Mediator scandal here in France. The only time the companies turn over all their raw data to anybody including regulators is to the courts when they are forced to.

secondtry
secondtry in reply to Peony4575

Totally agree Peony, there is not sufficient balanced discussion here or elsewhere on the cons of taking drugs, which makes me more wary. I have not started ACs yet (male, 67yo, Lone PAF, very well regulated with Flecainide & lifestyle changes). My decision to postpone taking them is not taken lightly and with some difficulty as I pull together a consensus of all I read here, my individual circumstances including discussion with my wife. My cardiologist was OK about it but did agree at my request to give me them as a PIP in case I had another extended AF episode and wanted to start after 24 hrs without a delay.

Peony4575
Peony4575 in reply to secondtry

Indeed. Totally agree. Balance is lacking . That is a brilliant idea having them as a PIP I did wonder if I got a second episode when travelling out of the country ( not that that will be any time soon ) and lacked confidence in the local healthcare system what would I do and that’s a fine solution . Thank you for the tip

Spangle14
Spangle14 in reply to secondtry

Secondtry, have you only ever had the one AF episode?

secondtry
secondtry in reply to Spangle14

I had 9 episodes in April 2014 whilst on 100mgs Flecainide, turned down an ablation, requested 200mgs Flec instead, which stopped it. Notwithstanding this I was encouraged as I was diagnosed Lone PAF (to which I personally added vagally mediated later) and began 7 years of essentially improving my lifestyle on all fronts. The result has been no AF to speak of to date; just two approx 1 hr episodes which I stopped myself by listening to a slow heart beat and the second one by gulping a cold drink down. I have been fortunate that all of this has gradually improved my energy and QOL generally. Lastly, I think it important to stay positive, one day at a time and accept that AF may come back but in the meantime.........

With the greatest of respect,the balance of effectiveness and side effects is in favour of anticoagulant therapy.The main strokes in patients with atrial fibrillation is ischaemic strokes,which if not fatal can be extremely debilitating.I except it is up to you if you want to take anticoagulants,maybe take another one if you get side effects from one and please remember the effects a stroke would have on your family as well as your self.

I don’t think anyone has disagreed with that

We each have to weight these things for ourselves and make our own best choice. There actually is not a one-size-fits all answer for everybody. Premature or unnecessary dementia also not a good outcome for anyone. But not the cardiologist's problem... so he doesn't care.

I think my cardiologist does care!

What about mini strokes? They are the alternative to microbleeds surely?

You are right. The European Society of Cardiologists changed their guidelines a couple of years ago . It is only if the score of 2 is for being female and age ie no comorbidities. But not all cardiologists follow this and some will have you on anticoagulants at the bat of an eye. With my first attack of afib I was hospitalised and the hospital cardiologist put me on Préviscan ( a vit k antagonist ) despite my score only being 1 for being female. My own cardiologist let me come off and only insisted on the anticoagulant when my score had gone up to 3 - over 65 plus a mild TIA.

Anybody coming off ACs I did read somewhere that such action can raise clotting issues albeit probably temporary; if I was in that position in the future I would make sure I maxed out on the other precautions one can take to avoid this issue occurring.

I was only on the Préviscan for 3 months and during that time my INR was always slipping below 2.

I have been taking Apixaban for 6 years with no side effects but I don't often suffer side-effects from drugs.

Don't be tempted by aspirin. NICE (the UK regulatory body) determined it causes more problems than it avoids. It isn't as benign as people imagine.

I don’t rely on my imagination when deciding which drugs to take . I was a medical rep for over 20 years and well used to reading NICE guidelines and clinical papers . I also developed a healthy degree of scepticism

Singwell
Singwell in reply to Peony4575

Tell me more about the HAS-BLED score Peony. I didn't know it existed. What I do know is post menopause I tended to bleed more easily when cutting myself or snagging my skin during gardening etc. So I'm curious to be better informed. the side effects I've noticed are - I think - slight thinning of skin and see me hair loss. My gums bleed more too.

Peony4575
Peony4575 in reply to Singwell

Google it to have a proper look but you get a score for age, liver or renal disease , hypertension , prior bleeding history , unstable INR etc to ensure the benefits of anti coagulating you outweigh the risks. People here are talking about thrombotic strokes there are also haemorrhagic strokes and other forms of bleeding . Am not anti anti coagulation by a long way if I develop chronic AF I would take it . But it’s not a harmless risk free option either

Singwell
Singwell in reply to Peony4575

What is INR please? Seen it mentioned a few times here. Thank you!

Peony4575
Peony4575 in reply to Singwell

It’s complicated . Google again. Simply it’s a measure used to check if blood thinning agents are working or levels are too high

Singwell
Singwell in reply to Peony4575

OK. I've asked my GP for various blood tests this week and will mention this.

Peony4575
Peony4575 in reply to Singwell

I think they only test it routinely if you are on warfarin. Not on Noacs

Buffafly
Buffafly in reply to Singwell

NOA Cs work on a different system, INR is for warfarin /Coumadin.

I have had side effects from every drug I have taken for my AF, EXCEPT apixaban. No side effects from it at all.

None you can see/feel anyway

F-M-C-MM
F-M-C-MM in reply to Peony4575

Hi Peony,I concur with your opinion on drug side effects and wonder if you have heard about migraine aura being caused by apixaban usage?

Peony4575
Peony4575 in reply to F-M-C-MM

Thank you. Am afraid because I don’t get migraines I haven’t had a reason to look into that

kkatz
kkatz in reply to F-M-C-MM

Hi can you point me to more info on the migraine aura.I take edoxaban and have this problem and have thought it down to it.

I remember how many days it took me to get up the courage to actually start the Apixaban. I was just as worried as you. Over time I did develop a side effect and cannot take any of the NOAC family of drugs, so have ended up on Warfarin and doing fine. I have a similar risk score but my father had a mild stroke as a result of AF and I would like to try to avoid that. It is hard to get the balance right isn't it. I had long periods of time off the anticoagulants when they were trying to work out if they were contributing to my vasculitis and I certainly felt more confident- a sense of relief - going back on them. I guess we all have to work through the issues that are important to us and make our own informed choice at the end of the day

Mrsvemb
Mrsvemb in reply to Ellembee

Like you, I am unable to tolerate any of the NOAC drugs. I have had them all. I have finished up on Warfarin too and so far so good.I originally refused Warfarin, but in the end had no choice. I wouldn’t risk having a stroke.

No side effects at all and there would have to be some pretty serious ones for me not to take an anticoagulant. You don't have any Spangle, you just think you might.

Let's put this into context: I don't know anyone who has had Covid. I know 3 A-Fibbers, not on anticoagulants, who have had strokes - one sadly died. No contest Spangle.

I was on Apixaban prior to being put on warfarin and happy to say I had zero side effects. If you have been advised to take anticoagulants please heed the advice. Surely a few tablets is better than a stroke xx

We all have the choice and we can all put a case to support our view to justify our stance. The choice is yours and so are the consequences. For me personally I take Apixiban with no adverse reaction for over 6 years now. I am in permenent AF and not to keen on playing russian roulette with my life. Good luck.

Hi I have a Chadvasc score of 1 (previous high BP now gone since I lost weight) so was told I could come off apixaban, I refused as I still have the odd short episode. Been on it since 2017, no side effects apart from bleeds lasting a little longer and bruises take a day or so longer to heal. It's the safest anticoagulant. I have had major dental surgery whilst on it, extractions, bone graft and implants. Dont take risks with things like strokes is my view.Andy

I’m on Xarelto and I haven’t had 1 single side effect in 1.3 years of taking it. Actually I have 2 issues with it. 1. I now have to wear a goofy ass helmet when I ride my bike or Segway scooter. 2. When I cut myself when cooking that finger bleeds for over an hour.

Other than that I’m good.

I am moderately intolerant of drugs so telling you that I have zero palpable side effects with apixoban may not be of any value. I have taken it for 3 years and post ablation it is my only med, but I would be hugely concerned if I was told to stop taking them. ( 2 tabs a day 1 am and 1 pm)

I know you worry about the microbleeds etc but being blunt , for me they are not in the same league as a stroke when it comes to fear factor and awful often irreparable damage to quality of life that a stroke can bring , setting aside the risk of death.

If you have any condition like afib the treatment is a balance between doing nothing with risks and taking meds ... with some risks.

God forbid if you decide to not have apixoban and have a stroke the decision would weigh very very heavy I am sure.

Steve

I did have a stroke, that’s when I was given apixiban. If I have the choice of a stroke or NOAC the NOAC would win every time. I don’t like taking medication 💊 of any kind so for me it was a real wake up call. I’m thankful for modern drugs and the NHS because if I lived in the USA 🇺🇸 these drugs would probably take most of my income. So I’m thankful

Hi I had exactly the same thoughts after my first visit to see the blood doctor and the 4 page document they read to you, it took me around 3 months to make the decision to take them. plus I’m a butcher by trade so there was the extra worry about cutting myself but I’m afraid the thought of a stroke and the consequences of being totally parallelised for maybe the rest of my life eventually swung it for me

I have no side effects I’m aware of and I do bleed a little more if I cut myself but not enough to stop me taking them good luck 🤞

Please remember that the vast majority of patients on anticoagulants do not have side effects.It is frightening to read the side effects which is on the information with your prescription.Some of these side effects are rare.The vast majority of patients have no side effects.

Hi Spangle. It sounds like it would help you to get some good information on the anticoagulants and their effects. Someone here mentioned the HAS-BLED score - which I'd never heard of. Why don't you ask your GP to calculate that for you to help make a decision. It IS a judgement call and the more informed you are, the easier your mind. My opinion obvs but also my experience. I find out as much as I can and make my own risk assessment based on quality of life.

To answer your question. Three years plus. No known or observed side effects. None.

Hi I am 60 have been on anixaban for 3 years now with no side effects at all, I am grateful for the peace of mind the medication gives me. When I was 29 I had TVT and was put on warring which while helping me medically at the time caused hair loss, very easily horrible bruising fatigue I was checked weekly at the blood clinic so apixaban is a dream medication. Take it as instructed by the Dr and be grateful

Just like to say that it is not a case of being ungrateful - I wish it were as simple as that. I am truly grateful for modern medicine, but as I mentioned before, a phobia of medication isn't logical and I would much rather not have that phobia. I am pleased to hear that you are getting on well with Apaxiban, it is not my aim to give it a bad press.

Peony4575
Peony4575 in reply to Spangle14

Hi Soangle. Some people don’t seem to realise you can’t bully a person into overcoming a phobia. If only it were that simple there would be no phobic people

Spangle14
Spangle14 in reply to Peony4575

In fairness, it's probably difficult to understand and a meds phobia might not be that common 🤔All in all, the replies on here are helping me, even if they are ones that I don't want to hear! I have to weigh up the pros and cons on a personal level. I am trying to look at ways of mitigating my risk of a stroke, without taking the meds but I remain cautious that this may not be possible and I will have to take them. I have been very interested to read about people possibly. Using ACs as a pill in the pocket and would like to find out more about this. My partner thinks I should just stop fannying around and take the pills, but he doesn't have a phobia around meds and would simply do as the doctor ordered. My daughter is a nurse and she thinks that I should take the meds, but she does have some sympathy around my phobia. It is hard isn't it!

Peony4575
Peony4575 in reply to Spangle14

Yes. And it’s difficult because your phobia has truth in it, drugs can be potentially harmful. But when phobic the odds are exaggerated . A person who is afraid to fly you can tell them 98.8% of flights arrive safely but in their case they are convinced the one they get on will crash . Their fear is logical, an aluminium box a mile high in the air doesn’t sound that safe . But they will get in a car though the risks are greater because it’s familiar and they accept it. My understanding of the PIP thing is you can have it ready to start at short notice not that you can just take it for an episode perhaps the chap who said it can come back to clarify. I think medicine phobias are common . If you decide you think you should take them then remind yourself you are in charge. Get a prescription filled and live with the box for a few days reminding yourself those pills could save your life. Then tell yourself you will just take one and if you don’t like it you can stop. Choose a time when your partner is going to be around for a few days as you may feel anxious. If that goes ok you can take another and see how that goes reminding yourself you are in charge and you can stop. And so on. Seems ridiculous to people who don’t have phobias but gradual exposure is the way to overcome them and it’s tricky when it’s taking tablets. Good luck anyway

Spangle14
Spangle14 in reply to Peony4575

Thank you so much Peony 4575 - you have given me a lot of time and thought, and I really appreciate your understanding. I do have the pills already as I was given them following an episode of afib. I am trying very hard to see them as a friend, not foe.Yes I will try to get more clarification on the use of ACs as a PIP x

Peony4575
Peony4575 in reply to Spangle14

If you find anything out can you please let me know because would be interested . I am frightened to have the new vaccine because I have a tendency to react to things but know I will have to make myself because Covid is an immediate danger . But I will be anxious when the rest of the people in the queue will probably be over the moon !

Spangle14
Spangle14 in reply to Peony4575

Of course I will Peony4575. I can message you, although I guess others on here might find it useful too. Yes, am with you on the Covid vax but know that we have to stop this dreadful thing and it's for the greater good. My daughter had her first jab recently and I was worried about that!

Peony4575
Peony4575 in reply to Spangle14

I can’t do links but have found a study which says it’s ok if you commit to daily ECG monitoring (in PAF)Google

“Intermittent vs Continuous Antocoagulation therapy in patients with Atrial Fibrillation iCARE-AF a randomised pilot study published in The Journal of Interventional Cardiac Electrophysiology”

Only a small pilot study but positive. The only patient who had a stroke in the pilot was on continuous therapy .

Hope that helps I will be showing it to my cardiologist

Peony4575
Peony4575 in reply to Peony4575

tctmd.com/news/anticoagulat...

This is a link ( hope it works) to an article about pill in the pocket approach to ACs for people who don't like ploughing through clinical papers but are interested. Not suitable for everyone but definitely a safer way forward for a subset o patients

Spangle14
Spangle14 in reply to Peony4575

Thank you so much for this, will take a look x

I've taken Apixaban for six years with no problems. Do you want a stroke? No? Then take the medication or see your doctor. Don't mess about.

I have taken Apixaban for over 7 years with no side effects and, more importantly, no stroke.

Never had any side effects. I get what you say as once we start to read that piece of paper it gets us in overdrive......But....From what I’ve gathered from quite a few posts on this over the years I’ve been here I think the answer to you problem is it’s a pretty good tablet, and well tolerated. Honestly it’s a no brainer isn’t it...a stroke can be devastating. I see it as my” little helper”....when there’s so many things we can get wrong with us as we age, this little helper ticks that stroke box to not worry about.

Try not to worry, you’ve been prescribed it for your good, toss that side effects bit of paper in the bin!

You’ve nothing to loose to start it.....it will become a daily habit and you will soon forget these worries as time goes on.

Sue

I was prescribed Apixaban 3 weeks ago after I had another A F problem. I used to be on clopidogrel for years with no side effects. But the consultant told me it would be better if he changed my tablets. I am on 5mg twice a day. At first i felt tired and lethargic. But now my body is getting use to them and I am coping a lot better and almost back to my normal self. My pharmacist has told me they are the best if I can cope with them. All these type of tablets apparently have similar side effects. Keep persevering a little longer if you can. Or can the doctor lower your dose.?

I had a choice of blood thinners I could use. I chose Apixaban as it put the least amount of chemical into my body to do the same job as all the rest.

I had a stroke 3 days before Christmas 2019, I was very lucky as it was thrombolised in time for me to recover with no after effects. It was discovered then that I had AF and was put on a number of drugs including Apixaban. I've had no side effects from them, I also worked in the pharma industry and am well aware that the side effects listed are everything that has ever been reported. We are all different as we all know what a mongrel condition AF can be. TBH I'd rather the drug than a stroke. I also had BC 10 years ago, radiotherapy is not without its risks but would you refuse it????

I have been on the forum before about my dramatic hair loss caused by apixaban but the thought of a stroke terrifies me I just wonder if there are any anticoagulant s that do not cause this problem

I have been at both ends of the spectrum of the other side effects of the family of drugs I call "blood thinners" that does not appear in the sheets of bumf they put in the pill boxes (which I will not read). First they got my dose so high I got internal bleeds, then they got the doses so low I got blood clots in my lungs.

I have been on Apixaban for a few years now and will put up with any side effects real or imaginary as long as I keep going to see my grandchildren grow up.

Please pop the pills and live your life.

Hi, I’ve been on Apixaban since 2015 following a DVT ( and previously a PE). I haven’t noticed any problems at all.

In reply to your question I have been on apixaban for three years with no side effects, I am like most of us in not wanting to take medications but a very dear friend had a debilitating stroke that left him without speech caused by him stopping his anti coagulation. So for me its an easy decision after seeing what he and his loved ones went through.

I felt EXACTLY the same as you last April, when I finally plucked up the courage to begin Apixaban after putting it off for four months. Here we are ten months on and I have had NO side effects whatsoever. I have had the usual cuts and scrapes over the intervening months and I haven't bled uncontrollably ...perhaps I take slightly longer to clot but my biggest fear, bleeding to death after a routine nosebleed, is not a factor at all. Everything is great and I wasted so much time dreading a bogeyman that doesn't exist. Good luck. X

I have been taking it for four years with no side effects.

I have side effects of blood thinners also. I was offered the option to be evaluated for a Watxhman Device with is a LAAD. Please Google it as it is too.much to type. With this, I will be off blood thinners in M 6 months (the protochol they use). So now I just take my afib meds and not blood thinner and my risk of stroke is like it was when I did take blood thinner Just something to consider.

Been on Apixaban for the last three years with not a moments concern.........absolutely NO side-effects!!

Ah, yes, have read up quite a it a bit about LAAD and my cardiologist discussed it as an option, but told me that it isn't available on the NHS and I would have to have proof that I can't take tolerate the bloodthinners. Have you had the Watchman procedure done yet?

Pjt55
Pjt55 in reply to Spangle14

Yes ,last November (2019). It has been wonderful. I am a fall risk as I have severe spinal damage so the risk of falling and having uncontrolled bleeding from the fall is now gone. It was the easiest surgery of all that I have had. Easier, I feel ,than an ablation.

I have been on Apixaban for nearly a year now without side effects. ( I think)I do however take quite a few tablets due to having a quadruple bypass 4 years ago and last year being diagnosed with AF.

I also take Bisoporol 2.5mg (recently increased from 1.25mg ) although I already have a slow heartbeat, and I think it is this drug which is causing some side effects, tiredness etc.

It must be your decision based on the advice you get from the relevant medical experts who know your medical history.

Good luck.

I have been on Apixaban for nearly 2 years. I think it contributes to my joint pain. I do not worry about bleeds and having had a TIA ( albeit very subtle) I know I have to take it. But I don't like taking it!

After debating for almost 2 years, I decided to bite the bullet and start Eliquis! I have no side affects at all and am so glad I made the right decision to start taking the meds. I have lone Afib for 14 years now with only an occasional episode (maybe 2 or 3 times a year lasting less than 30 minutes), but it only takes that one time to cause a stroke. I now take them faithfully and feel protected. I know it’s scary, any new drug is, but any risks far outweigh the potential consequences of a stroke. No bleeds, and I’m so clumsy, always have been, maybe an occasional bruise from bumping into something I don’t even remember bumping into. No problems with gum bleeds...no problems at all.

Spangle14
Spangle14 in reply to Scat319

Thank you for your reply - I've had a couple of issues around bleeds, which is why I'm reluctant, though I have discussed these issues with my GP and cardiologist but they didn't seem overly concerned. I think that I would lean much more towards the meds if I was at higher risk but as you point out, it only takes that one time, which obviously terrifies me. It's hard to explain but along with the fear of sud effects, I also get concerned about taking meds just in case - I would be more accepting of taking an anticoagulant if I went into afib and wanted to reduce the risk of clot/stroke. I monitor myself quite a lot as I have the single-lead Kardia and a BP monitor that shows irregular heartbeat. The unknown is more during sleeping hours, so I am now thinking that I should talk to my cardiologist about the possibility of wearing a monitor (like an Apple watch, or the like) that can record bouts of afib during sleep. It would be a lot easier to just take the bloomin' meds but the fear/phobia has just got out of control. Out of interest, what was your Chads score when you were first diagnosed with afib? I'm guessing that it was pretty low as it was lone afib.

Scat319
Scat319 in reply to Spangle14

I have a loop monitor which is constantly monitoring me 24/7. I'm due to have it replaced because the batteries only lasted 3.5 years. Naturally thanks to Covid, my cardio wants to wait until it's safer to have replaced BUT that being said, I loved the security blanket of always knowing if I were to go into afib during my sleep (thankfully not in the 3.5 years). Like you, I HATE taking any meds and having a sister who is a medical editor, is worse than google lol! I get all the latest on the new meds, but even she agreed with me on the Eliquis. After 2 years, I take it without thinking, feel like I'm protected against the stroke. I still am hesitant about any meds, a phobia of mine I guess, but I'm fortunate to not have any adverse reactions to the Eliquis. I also have IBS so was worried about gastro issues, but it hasn't bothered me. I've heard some will play havoc with digestive issues but so far, so good. Best to you with whatever you decide to do..and hopefully 2021 will be an afib free year!

Buffafly
Buffafly in reply to Spangle14

Hi Spangle, if it’s a phobia I guess all the sensible arguments aren’t going to affect you, but here goes: Having AF in itself makes you vulnerable to stroke, whether you are in AF or not, also I had a monitor and was not aware of a sustained episode of AF while I had it but the result came back as ‘frequent episodes of AF’. If you are worried about putting chemicals in your body I assume you eat only organic vegetables and meat and drink untreated water because everything else has chemicals in it and now we discover particles of plastic as well 🙄 The Stone Age was great for a few very strong and lucky individuals 🍀

Spangle14
Spangle14 in reply to Buffafly

You're right, I don't eat only organic food and veg, though I do look at organic foodstuff longingly when shopping but it is an expensive option, though I do buy some.I would be really interested to know how frequently/infrequently I go into AF - I do have Kardia monitor but I appreciate that it only gives 30 second snapshots during the day, though it has, at least, given me some idea. I am thinking of investing in a smartwatch to monitor heart rythmn during the night.

We are all subjected to unnecessary pollutants, unless lucky enough to live on a remote unscathed island somewhere and I am sure that modern living is responsible for a lot of our ills - they say that necessity is the mother of invention and there is no doubt that modern living has brought about great advances in medicine. I am truly in awe of the recent covid vaccine development.

I have always been hard pushed to take meds and will only reach for a paracetamol when a toothache or headache has become too much. Strange, I don't know where my reluctance has come from, as I don't recall having any adverse reaction to any medicine (touch wood!) and now, it would seem, that reluctance has turned into a phobia 😕

Buffafly
Buffafly in reply to Spangle14

I do understand your reluctance to take medicine especially as it seems I am the only person in the world whose stomach is upset by paracetamol 🙄 I am not sure how knowing the frequency of AF will help but if you think it will, go for it! Btw you can set Kardia for up to 5 minutes which can be quite interesting.

Spangle14
Spangle14 in reply to Buffafly

I think it would help in knowing how prevalent it is with me, I would be more convinced that I should take the anticoagulant if that were to be the case. I will check the settings on Kardia, though I think I had noticed that. Thank you

Spangle14
Spangle14 in reply to Spangle14

Just to add, I have had two very obvious episodes of AF and two, seemingly very short-lived episodes that were not quite so obvious

I appreciate your honesty in speaking to the psychological aspects of submitting to an anti coagulant regime. The mental stress of accepting risk, especially new ones is difficult. I was fine with aspirin and AF. My doctor gave me a choice five years ago, aspirin or anti coagulant. Since I'd had no issues with my then newly diagnosed AF or with aspirin, and after reading the bleed risk of anti coagulant s, I chose the former. It was an easy psychological lift. Short story, I had a stroke. Lost a quarter of my vision. Was treated at Johns Hopkins and told "you're a lucky man to have lived or not be dealing with life changing disability." That experience put the bleed risks in a new perspective for me. It made the psychological aspects come into clear focus for me. Risk is real, either way, but 6x higher of stroke w/o anticoagulant bit me hard. I've been on Apixaban 2 years, no issues, yes there is risk, but post stroke, the bleed risk sits well with me.

I was SO reluctant when GP suggested it 4+ years ago - I wasn’t on any daily meds, hate taking anything, didn’t want to start, also didn’t want to stop occasional NSAI painkillers for my bad osteoarthritis.

GP talked me through the low CHAD score and bleed scores and emailed me bumph, but I still said no. She was also recommending a different anticoagulant.

Cardiologist also talked me through, up to me, I wanted to only use it when in AF (I have paroxysmal) he said no evidence risk can be narrowed like that. I still said no, he said ok. But here’s a prescription for the safest one I know, Apixaban, take it with you. Reminded me that NSAIDs are not best with AF any way, but the very occasional use wouldn’t be disastrous

Belatedly I remembered my brother - he had a stroke, five years ago, I had diagnosed it when he telephoned me, called the paramedics. I had remembered the stroke but forgotten it was due to AF (didn’t seem relevant at time, predated my AF journey). His stroke led (3 years later) to epilepsy so he had to give up driving - and was really scared. So for last 5 months I have taken it. No side effects, no bruising, no problems when I had acupuncture.

I have good friend, retired Gp who also has AF, heavily into all the research, not a pill popper, he thought I should take Apixaban. So here I am... good luck with your decision.

I have been on it since July with no side effects. My mum is 92 and been on it for over 3 years with no side effects. I am told it is the 'gold' in anticoagulants

Hi Spangle14. I did read the enclosed leaflet with my apixoban 4 years ago but as far as I'm concerned the side effect I did experience BEFORE I started on the anticoagulants qwew far far worse. I was due to start anticoagulants early in 2009 but delayed the start because I was going on holiday to the Canaries and my grandchildren were going too. As a result I has a serious stroke two days after returning -on 29th April 2009 . It has left me severely disabled, unable to use my left arm and reduced mobility in my left leg. My hand spasms as does my leg and foot. My advice is do as your clinician has advised. None of us like to take all these drugs. Please note I have never smoked , only drank socially and in moderation, worked hard, excercised. Please if you have A Fib keep your blood thin .

Hi, I've been on Apixaban for a couple of years now with no side effects that Im aware of, if that's any help.

Huge thanks for all your replies - I have been overwhelmed with your responses (in a good way) and they have certainly given me a lot of food for thought. This all helps me with my AF journey and I will, hopefully, keep you posted as to what route I take. Thank you for giving me your time, it has been good to get different perspectives.

I have been on this for nearly 5 years now and to my knowledge have had no side effects. I thought it would take longer to stop bleeding if I cut myself - where I used to stop bleeding very quickly but I have noticed no difference - no more bruising than normal which I did expect at my age with paper thin skin but really no change. Try not to get anxious otherwise every strange thing that happens to you you will put down to apixaban when it is your anxiety. when my wife gets like this she does yoga breathing. You should be monitored with blood tests, at first either every 6 months and then yearly. My cardiologist requires blood tests every year now but my GP surgery advocate every 6 months so am going for one tomorrow.

I have read with interest the comments, as I have AF, and a few questions come to mind,Apixaban dosage is usually 5mg twice daily. Whereas Rivoraxaban dosage is 20mg once a day. Statistically the more tablets you take, the greater the chance of getting one wrong or missing a dose.

1. So why not take a tablet that is only needed once a day?

2. NOACs cannot be used with valvular AF. What is "valvular AF" ?

I take Warfarin and am considering changing to Rivoraxaban. But currently I know my blood coagulation rate is okay because I have a regular INR (International Nominal Ratio)) test.

2. How does the doctor or specialist know if your coagulation rate is okay, when on NOACs?

The measurement of coagulation rate seems to have a mystique about it. Why can a pathology lab not measure the coagulation rate if you are on a tablet other than Warfarin?

Surely they use the same equipment to test the blood.

secondtry
secondtry in reply to DERLIN

If you do change I suggest Apixaban (more popular here) rather than Rivoraxaban; the latter was downgraded by my cardiologist (who at the time was lead in the area for ACs) in favour of Edoxaban due to recent research in the States. Like you I don't have the knowledge but it would be good if the coagulation rate check could be done 6 monthly and raise a red flag if your level warranted starting ACs.

You and others may be interested in this 🤞 my maths is correct:

The lifetime incidence of an abnormal clot in the general population is 1 in every 100,000

The lifetime incidence if you have/had AF is 1 in 20,000 (i.e. x5 risk, as often quoted here)

The lifetime incidence if you have/had AF & Factor V Leiden (heterozygous) is 1 in 2000

nb this version of FVL happens in 5 out of 100 Caucasians

The lifetime incidence if you have/had AF &FVL (homozygous) is 1 in 333

nb this version of FVL happens in <1 out of 100 Caucasians

More info/source: nationwidechildrens.org/con...

stoptheclot.org/wp-content/...

Spangle14
Spangle14 in reply to secondtry

That's very interesting secondtry - I'm now wondering if I have Factor V Leiden. Yikes!

secondtry
secondtry in reply to Spangle14

Don't worry most people have it without knowing. I found out in 2001 after a 5 hr non-stop car journey when I developed a blood clot in my leg. Difficult at the time (especially as the GP missed it) but just the other day I remarked to my wife that subsequent daily walks x2 have I am sure helped keep AF at bay and helped avoid other chronic illness developing; so in a strange way I am glad it drove me to improve my lifestyle.

Spangle14
Spangle14 in reply to secondtry

That really resonates - I have always been a keen walker so always try to do an average of 3 miles a day - some of it brisk. I too have some gratitude for the wake up call of afib, though not a club I wanted to join! I have cut down on some of my unhealthy eating habits - largish sugar and fat intake and that can only be good. Just allow myself the occasional sweet treat from time to time. Have also given up alcohol - I was never a big drinker but usually went slightly over the units recommendation as I would have a glass of wine every evening, sometimes two. Fingers crossed we can keep those afib episodes at bay aand although Im still not on the anticoagulants, blood clots are never far from my mind and I do take the threat seriously.

Have you checked the Watchman device (LAAD) I have it and now am safely off of blood thinners..only meds for the rhythm part of afib. And no worries anymore of a stroke.

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