New here and just diagnosed with AFib... - Anticoagulation S...

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New here and just diagnosed with AFib. Need advice please regarding Apixaban.

Eddie49 profile image
36 Replies

Hi all. Fourteen years ago I had 'mild' heart attack and was put on a statin, blood pressure tab and aspirin. At the time my G.P. questioned whether I had really had a heart attack (but that is another story!). Two and a half years ago I went for a swim in the local baths and after about one minute in the water had my first AFib episode, was sent to A+E and reverted after about five hours. I was given a monitor to wear for two weeks but nothing showed so just carried on as usual. Five weeks ago on my 70th birthday I went to the gym to use the walking machine etc., which I have been doing for the past five years or so and consider myself to be reasonably fit. I then went to the beach for a very short swim, which I have done many times, and after five minutes had my second episode of AFib. So instead of partying that night with friends I was in A+E and reverted after about twelve hours. Apart from this I have had no issues. The consultant suggested I consider going on Apixaban and I am awaiting a stress test, Echocardiogram and a 24 hour monitor. My wife and I are going to Japan in two weeks to visit our son for the rugby World Cup. I decided to hold back on the Apixaban until we come back. Reason: It seems that if you fall, or bang your head etc. you have to go to A+E, which could be a bit difficult in Japan. Also, I have spinal issues which causes nerve pain. For this I have been taking Cannabis Oil with good success. However, I have to stop this as apparently it can affect the Apixaban. I suppose my question is, am I being a bit stupid in my reasoning i.e. wait until after the Japan trip, have the tests and then make a more informed decision and stay on the CBD oil until then? My wife thinks I am being very foolish and that I have based this decision on the fact that I want to be able to drink lots of beer on the rugby trip. My normally low resting heart rate is around 50-55 beats but the stress of this is making it rise considerably most days. I mean, do I need to be on an anticoagulant now after only two episodes of AFib two years apart and before further tests? And the consultant said that I should 'consider' an anticoagulant Sorry if this post is too long, but any advice would be most welcome.

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36 Replies
SpeedyH profile image
SpeedyH

That is a conundrum and only you can weigh up the pros and cons. Another couple of things to add to the melting pot - having another attack and ending up in a and e in Japan isn’t good either but on the other hand the Apixaban isn’t a guarantee that that scenario won’t happen. One thing that I think you really need to consider though is that Apixaban is a pretty potent med. Many people who take it are fine but equally many people suffer severe side effects especially in the early weeks of taking it. These include devastating fatigue, nausea, muscle weakness and joint pain. These would totally ruin your holiday if you had them. I don’t know anything about afib, but a quick google suggests that there are potential triggers like tiredness, exercise, alcohol etc so perhaps a possible solution would be to wait till you have had the tests before taking the Apixaban and being careful with the triggers until then. Including avoiding the ten gallons of beer which will make your wife a happy lady!

Emarho profile image
Emarho in reply to SpeedyH

I am sure you know that you need travel insurance for this trip or it could be very expensive either to get treatment or, worst case scenario, special arrangements for repatriation. The insurance would be expensive, but they won‘t pay if you don’t tell them these details. Apixaban can be bothersome, but if you fly and suffer a DVT the result could be far worse. Good luck, whatever you decide, and I think I know what your decision will be.

Eddie49 profile image
Eddie49 in reply to Emarho

Thanks Emarho. I have been in touch with the insurance company to update them but haven't yet had a decision regarding probable extra cost of the insurance.

misswoosie profile image
misswoosie in reply to Emarho

just for info. A Fib DOES NOT increase the risk of DVT. A Fib increases the risk of a clot on the arterial side of the circulation and first port of call for a small clot that leaves the left ventricle is the Carotid artery and into the brain. Risk factors for DVT are completely different. Plus point of being on Apixaban before a long haul flight is that it will protect against DVT due to immobility and dehydration.

Eddie49 profile image
Eddie49 in reply to SpeedyH

Thanks SpeedyH. One G.P., who is the son of a friend of mine, told me the same thing, go to Japan and enjoy yourself and wait for the tests. Another G.P. told me that even if the tests show everything appears hunky dory at the moment I am still at risk and should really be on the Apixaban. Two G.P.s with slightly different opinions. A nurse at A+E told me that due to my age and background I am at massive risk of stroke or heart attack. Also, I cannot take the CBD oil to Japan anyway.

So it is make my mind up time.

SpeedyH profile image
SpeedyH in reply to Eddie49

Yes, make that decision and then you can relax. Have a very happy holiday and let us know how you fared when you get back! 🙂

Eddie49 profile image
Eddie49 in reply to SpeedyH

Will do. Thanks.

Emarho profile image
Emarho in reply to Eddie49

That seems typical of the confused state that treatment of cardiovascular is in in the UK. The two GPS are probably giving advice based on what they would do themselves, and one is a rugby fan. 😀 .

Eddie49 profile image
Eddie49 in reply to Emarho

Yeh, your probably right there. Thanks again.

JaneFinn profile image
JaneFinn

Hi Eddie,

Sorry to hear of your dilemma. I’m brand new on here too, but I’ve been a member of the AF forum here on Health Unlocked since I was diagnosed with AF 3 years ago. I thought you might like to join that forum as well, and have a browse on it? It’s full of helpful experiences and wisdom specific to the AF experience.

You could ask this same question on there, too? Every person on there has AF and most have battled with the tricksy issue of when and how essential it is to anti-coagulate. This is the link: healthunlocked.com/afassoci...

For what it’s worth, I’d personally recommend starting the Apixaban right away, assuming you meet the CHADVASC criteria. Stroke risks in AF sufferers are increased, even if not in AF at the time. My own GP patiently talked me through it all and persuaded me to start Apixaban when I was extremely resistant! I am so very glad I did.

Also I think the comment someone made about insurance is wise - they may need to know you’re being treated? Good to update them and check with them about cover.

Good luck with it all - I hope you have a fabulous trip :)

Eddie49 profile image
Eddie49 in reply to JaneFinn

Hi Jane, thanks for your reply, much appreciated. I do meet the CHADVASC criteria and having mulled things over and poked it with a stick, I am now thinking that it is completely unfair on my wife with this hanging over us. If something happened in Japan she is the one who would have to deal with it, so Apixaban it is! I will join the AF forum and post there as well. Cheers, Eddie.

JaneFinn profile image
JaneFinn in reply to Eddie49

That sounds good to me, Eddie - I feel the same on behalf of my husband... My doctor persuaded me it was the responsible decision :)

SpeedyH profile image
SpeedyH in reply to Eddie49

Good call! Now enjoy your holiday! 🙂

Eddie49 profile image
Eddie49 in reply to SpeedyH

Thanks SpeedyH.

I have AF and am on Apixaban. A few years ago I had a Reveal monitor fitted (small device fitted under the skin to monitor all heart problems) and this detected a problem. I then had a pacemaker fitted which solved some problems but I still have AF and manage it by getting up slowly. I have other unrelated health issues and on twenty tablets a day which I take as I am advised and feel very well. At the end of the day it’s your decision whether to ignore your doctors advice. You may enjoy the rugby but you might spend the time in A&E!

Eddie49 profile image
Eddie49 in reply to

Thanks Edna.

Suebo2 profile image
Suebo2Moderator

I think that you SHOULD start the drug straightaway. It’s not about stopping the AF, it about preventing a stroke!

Regarding side effects- they are rare! There are literally thousands of people on these drugs.

Any drug that us taken can affect you in some way

As regards wanting to drink- that is not s problem provided you don’t get drunk and bang your head

Make sure that you are in the correct dose

If you don’t like twice a day drug swap to a daily one

Good luck

SpeedyH profile image
SpeedyH

Hi Suebo2. I agree with most of what you say, however the side effects with the NOACs are definitely NOT rare. A significant number of people suffer devastating muscle and joint pain, exhaustion, nausea and concentration problems. This is now being acknowledged by haematologists so hopefully in the future there will be more research into this, particularly the systemic effects of inhibition of various elements of the clotting cycle (and why some people are more affected than others), leading to new and better drugs.

Suebo2 profile image
Suebo2Moderator in reply to SpeedyH

Thanks Speedy, Considering the thousands of people on these drugs the side effects are rare in the grand scheme of things

Any tablet can affect you in some way

Some of them suit some people better , so worth switching.

But it’s also about weighing up

risks and benefits of all the drugs

Just saying that need to

keep an open mind.

Eddie49 profile image
Eddie49

Thanks both. I know, as SpeedyH said earlier, this is a conundrum. In reality I should be taking the Apixaban without question. However .... I have been taking it for just under a week and I do feel that it is making me very lightheaded and I feel that someone is tapping me on the back of the head with a hammer. I realise that this could be exacerbated by stress but if this continues or worsens then it will have an impact on the enjoyment of the holiday. But then the alternative could be ... I have made an appointment to seem my GP to see if it is possible to cut the dosage to 2.5 mg x 2 per day and increase after the holiday? I will probably be told no but we will see.

Suebo2 profile image
Suebo2Moderator in reply to Eddie49

You need to take the correct dose !!

Is it worth a stroke?

Did you have s full explanation of why you need the drug?

Or are you winding us up?

misswoosie profile image
misswoosie

Yes, you're being stupid! Do you realise that the AF increases your risk of having a stroke 10 fold,and that's why they're prescribing Apixaban? Imagine having a stroke in Japan (so to speak) Far rather go and get checked out if you bang your head (which isn't really needed unless you start having any neurological symptoms.

I was a stroke nurse practitioner for 5 years. Don't listen to that GP! They're the reason we still only have about 70% of A Fib patients who should be anticoagulated actually on treatment!

At least with Apixaban you don;t have to have regular blood tests and alter dosages etc like warfarin.Not saying that you don't need to watch out for signs of bleeding (a rare side effect) but it's a much easier drug to get along with.

My father who's 87 was diagnosed with A Fib 2 years ago when h went into hospital with a fractured hip. Started Apixaban 5 days after surgery and he's never had any problems. Recently he took a fair sized lump out of his shin with the corner of the car door. Yes, he bled a little more than you might expect, but nothing that we couldn't deal with with a clean tea towel!(the trip to A'E for steri strips)

If you tell the insurance company that you have A Fib and that you've been advised to take Apixaban but aren't going to they'll probably refuse to insure you.

Eddie49 profile image
Eddie49 in reply to misswoosie

Hi, yes I know you are right. Just that I am a bit scared that's all. I am being stupid and I will be taking the Apixaban. I really appreciate what you say. Thanks.

Suebo2 profile image
Suebo2Moderator in reply to misswoosie

Welll said!!

misswoosie profile image
misswoosie

Sorry Eddie. I've not had access to laptop for 3 days and my stupid windows mobile didn;t want to play on this site for some reason.

I think I probably sounded like a bully, but having worked in acute stroke for 8 years, and understanding the increased risk of stroke with AF compared to someone who doesn't have AF, compared to the risk of bleeding from Apixaban, it's a no brainer really.

It must be scary, but remember you're not the only one in the situation, and you can reduce your stroke risk by exercising , eating (more)healthily, not drinking excessive alcohol, and having your regular health checks etc.

Hope the insurance company are sweet with it all and you enjoy Japan!

Eddie49 profile image
Eddie49 in reply to misswoosie

Hi, no you were not bullying, just being (firmly) realistic, for which I am very grateful. I went to see the pharmacist at my surgery yesterday who spent more time with me and my wife that the G.P. ever does. She was lovely and told me exactly what you said. A problem I have with the Apixaban is that the morning dose is making me very lightheaded with a headache until mid-afternoon. She said to continue and hopefully this will ease. If not we will consider an alternative anticoagulant when we return from Japan. She also said I should have a blood test one month after starting anticoags, something the G.P. never mentioned. The not drinking excessive alcohol is a bit of a bummer, seeing as this is a rugby trip!! Thanks and best wishes.

SpeedyH profile image
SpeedyH

I totally understand your concerns about the dizziness and pounding head. These drugs are potent and I think empathy is sometimes short in people who don’t experience these effects. Perhaps see how you go like the pharmacist recommended, because for some people the side effects do settle. Your situation is unique as you have an important holiday coming up in the near future, giving you little time to either acclimatise to the new drug or find one that suits you better. I think this must be very scary and stressful and I admire your tenacity in finding a workable solution.

If you find, after a fair trial, that you still struggle with Apixaban, there are alternatives. Rivaroxaban acts in the same way as Apixaban but is a once a day drug, so if you are particularly struggling with your current morning dose, taking Rivaroxaban at night might be a solution. If I remember correctly, Rivaroxaban is slightly less efficient at preventing strokes than Apixaban so you would need to seek advice on this. Another drug, Dabigatran works in a different way to the other two so might be an option if neither of those suit, but it is a bit rough on the stomach and not suitable for anyone with stomach problems or ulcers. So there are options, and you will find the right one for you. PS. Don’t underestimate the impact that your diagnosis might have on you. Some people find this to be life changing and for some, the chance to discuss this with a trained counsellor is helpful.

Eddie49 profile image
Eddie49 in reply to SpeedyH

Thanks SpeedyH. The pharmacist was wonderful and the advice she gave was basically what you have written above. The advice I was originally given in A+E was 'I might want to consider going on a blood thinner'. Given the circumstances at the time I thought I had better investigate this thoroughly. Apart from the trip abroad, one of the issues is that I have had two spinal operations which causes a lot of nerve pain in my thoracic spine. I started taking CBD oil to great effect. The pain subsided wonderfully. However, from what I have read I cannot take CBD oil with anticoagulants. The pharmacist said she could not advise as there is not enough evidence. But she went on to say that she deals with many people who do take both because of the pain relief. So it is another thing to consider when we come back from Japan. Thanks again, much appreciated.

misswoosie profile image
misswoosie in reply to Eddie49

So annoying that there's so much evidence about some things, yet little regarding others. CBD can reduce platelet activity and therefore have an anticoagulant effect in it's own right.It can also interact with other medications, particularly warfarin, which is broken down in the liver by the same enzyme as CBD. Direct interactions with the newer anticoagulants haven't really been studied so your pharmacist is correct

I meant to say that it's good that there is now a drug that can reverse the effects of Apixaban in a matter of minutes if bleeding occurs or if for other reasons eg emergency surgery the effects need to be reversed.

I wasn't actually aware of this till yesterday. Good news for a lot of people , especially older people who are prone to falls etc.

Eddie49 profile image
Eddie49 in reply to misswoosie

Is the reversal agent available in UK or for now just USA? I have Googled it but can't seem to get an answer.

misswoosie profile image
misswoosie in reply to Eddie49

Looks like you're correct that it has a conditional license in the EU since early this year which means it can be prescribed, but the manufacturer still has to continue to provide data to the medicines agency. ema.europa.eu/en/medicines/...

Regarding the UK, NICE are faffing obout trying to make a decision, I guess mainly because, as with all new drugs that meet a previously unmet need it's expensive.

They started "cocnsulting" early this year but don;t expect to make a decision until next year.

As I said before, there are various "generic" things that work on the blood clotting system that can be used eg Tranexamic acid and plasma derivatives.

Jayge profile image
Jayge in reply to misswoosie

Yes, there is a reversal drug to apixaban but we were told the hospital where it was ordered does not have it and no instructions about where to go in a serious bleed. Anyone had instructions about the above?

misswoosie profile image
misswoosie in reply to Jayge

I have you have a serious bleed , regardless of the cause or what med's you're on advice would be to go to ring 999. If the hospital deosn't have it they will be able to get it, and there are other things like platelets, clotting factor concentrate they can give. The risk of serious bleeding on apixaban is low.Lower than onwarfarin for example.

misswoosie profile image
misswoosie

Glad your pharmacist was helpful. Sorry you seem to be having some side effects. I think the blood test might be to check kidney function because the dosage is dependent on weight and kidney function. Hopefully the side effects will wear off in time. Just checking they they've stopped your Aspirin.

We got my Dad an Apixaban warning bracelet online. It's just rubber so no need to remove for showering etc. It's important that if you ever were in an accident Drs know you're taking it as some treatment might have to be delayed by 12 hrs to allow the effect of the Apixaban to wear off. I think they can give a plasma infusion if they want to reverse the effects more quickly.

Eddie49 profile image
Eddie49 in reply to misswoosie

Hiya, yes aspirin is stopped. The side effects are probably exacerbated by tension and stress. My wife says that I should try to stop monitoring everything and go with it and she is probably right. But you are what you are ...

Thanks

Eddie49 profile image
Eddie49 in reply to Eddie49

Also, the bloods are to check Renal, Liver and FBC.

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