Taking an anticoagulant (Apixaban) fo... - Atrial Fibrillati...

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Taking an anticoagulant (Apixaban) for the first time.

28 Replies

When I was first diagnosed with PAF three and a half years ago I was prescribed Dabigatran which , after two days, produced a subconjunctival haemorrhage. This was not serious (although it took a month to heal) but a GP let slip that if it had been a retinal haemorrhage it would have been more serious. As I was then CHADSV 1, I was told I could defer taking the anticoagulant until I was CHADSV2 (which I have been for nearly two years now). Since I have had some recent chest discomfort and more palpitations/ectopics than usual -this is ongoing-my GP has said that I must take Apixaban 2x 5mcg. I was dreading this, but was about to take it last night until I re-read the Apixaban leaflet. This gave a very alarming list of side effects, including bleeding from the eyes ( a risk of 1 in 10- probably higher for me as I have had this side effect with Dabigatran), general bleeding and -most alarming of all - a bleed on the brain "up to 1 in 100" risk. I'm aware that the risk of a stroke is higher, but I still find the risks from the medication extremely high. My questions are:

1. Has anyone had any serious bleeds as a result of taking Apixaban (excluding accidents like cutting yourself shaving)?

2. If you have, say, a cut on the leg or a tiny broken blood vessel in the nose (both if which I have) would it be possible to bleed heavily whilst asleep unawares?

3. Has anyone had a bleed on the brain? How serious is this (possibly a silly question; I'm guessing it's not good)?

4. Is Edoxaban less risky? Or is there a better anticoagulant than this from a bleeding point of view?

5. Are there any alternatives to anticoagulants (I'm guessing the answer is no?

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28 Replies
rosyG profile image
rosyG

Hi,I've taken Apixaban for several years and have regular eye injections , have had teeth extracted etc and no problem . I think Apixaban was said to have the least brain bleeding- edoxaban wasn't around when I started it. I had some scary bleeding recently from a haemorrhoid but it stopped each time with no intervention. It just delays clotting slightly when you do have a bleed from something . I asked a speaker at an anticoagulation conference which he would take if he needed to and he said apixaban( again before edoxaban was available)

Hello Samazeuilh, you have been fairly active on the forum for nearly 5 years so I expect during that time you have already seen a fair bit discussion on all forms of anticoagulation. If you read the leaflet which accompanies paracetamol you probably would never take another one. Pharmaceutical companies will do everything they possibly can to minimise their risk of litigation so we tend to listen to the medics then decide as to whether or not we follow the advice they offer. As I’m sure you have read many times, I am not medically trained so all I can do is share the comments I have heard over the years from those who are.

1. Has anyone had any serious bleeds as a result of taking Apixaban (excluding accidents like cutting yourself shaving)?

We are told there is very little difference in the bleeding risk for all DOAC’s but from what I have heard, Apixaban has a marginal better record than the others. I don’t think I’m aware of anyone who has had a serious bleed. Anticoagulants do not cause spontaneous bleeds, they are generally the result from various forms of trauma.

2. If you have, say, a cut on the leg or a tiny broken blood vessel in the nose (both if which I have) would it be possible to bleed heavily whilst asleep unawares?

I’ve been taking Apixaban for over six years and minor cuts, nose bleeds etc only take a little bit longer to stop but on the basis that anything and everything is possible, the answer has to be yes, but is it likely, probably not.

3. Has anyone had a bleed on the brain? How serious is this (possibly a silly question; I'm guessing it's not good)?

As is often said, there is no such thing as a daft question and this one is no exception so I guess the answers are: Yes; probably very; I think you are guessing right

4. Is Edoxaban less risky? Or is there a better anticoagulant than this from a bleeding point of view?

See answer to 1 above.

5. Are there any alternatives to anticoagulants (I'm guessing the answer is no?

Some here talk about natural and/or alternative anticoagulants but the view from them that know about these things say that because they are not subject to the same research, tests and trials, there is no reliable way to check or confirm their efficacy. If they don’t work, the result is likely to be devastating.

As a final thought, taking any anticoagulants can cause consternation but if you type “Apixaban” in the search box top right of this page you will see references to many old posts. Of course there will be some who talk about possible side effects but the majority of people who take it, or any other anticoagulant see it as their best friend……good luck with your first of many doses… ..😉

in reply to

It's reassuring that the bleeds are not spontaneous which I didn't know. Thanks for your detailed reply.

BobD profile image
BobDVolunteer

Just to quantify things, I have been on warfarin (the original anticoagulant for at least 16 if not 17 years during which time I have had three major nose bleeds at night but guess what? Each time it was because I had been pursuaded to take aspirin (each time in hospital) despite my protestations as to the likely result. At least I didn't have to wash all the sheets and pillow cases! lol Lots of people take aspirin willy nilly without understanding how dangerous it is. Nothing is 100% safe, even doing nothing . Risk assessment and acceptance is part of adult life.

in reply to BobD

There is a lot to be said for taking warfarin according to the GP of a friend who takes it following a bypass. This is because it has been around for a long time and it's properties and long -term effects are better known than those of the newer DOACS.

BobD profile image
BobDVolunteer in reply to

Yes Dwight Eisenhower was teh first famous person to take warafin in 1948 I believe (Not many people know that) but for some it can be a reall faff. My INR is very stable and I onlt tesst every eight or so weeks unless I change drugs or anything which might affect it.

Regarding the DOACs these have been around for a good ten or twelve years or more so I don't think there are any surprises waiting.

CDreamer profile image
CDreamer

As a direct answer to your questions:-

1. No - but had a TIA when not taking anticoagulants

2. No

3. Not to my knowledge - Apixaban has the best recor for brain bleeds. My brother had 2 brain bleeds which required op to staunch but they were caused by alcohol. He lived.

4. Don’t know for sure - you’ll have to do your own research but my understanding is that Edoxaban & Apixaban are similar but Edoxaban is cheaper but Apixaban has fewer affects generally.

5. Not that are reliable and well researched.

in reply to CDreamer

Thanks for the reply. I woke up last night with a chest pain which seemed to be positional , i.e. it was alleviated on getting up. I did some googling and came across Prinzmetal angina (sounds like a heavy metal group) or variant angina. Apparently this tends to occur at night, is alleviated on changing position etc. So I'm wondering if it's that. I also had lots more ectopics than usual,

CDreamer profile image
CDreamer in reply to

Could be. I know recently I end up waking up with either Tachycardia or ectopics if i sleep on my left side.

in reply to CDreamer

I saw the GP and he said doesn't think it is likely to be the Printzmetal variant angina, He thinks I have Costochondritis -an inflammation of the chest wall which is painful but much better than having the variant angina.

CDreamer profile image
CDreamer in reply to

That’s sounds reasonable- are you content with that?

in reply to CDreamer

I'm hoping that the ectopics, palpitations etc. will settle down. I've been taking painkillers and Deep Heat balm for the Costochondritis and was ok last night. So overall things are better, but I'm not yet out of the woods.

Sfhmgusa profile image
Sfhmgusa

Because your questions have already been answered so well I wanted to put the other question that you need to look at .“Have people with afib but don’t take anticoagulants ever had life changing strokes ?”

The tragic answer is yes , often because they don’t know they have afib and the first “ symptom” they have is a life changing or even life ending event.

That is the risking not taking them so whilst I really understand your concerns this is a big risk benefit analysis and as a 3 year no problem apixoban taker I would say that the balance of risk to reward is strongly on the side of anticoagulants and ( for me) particularly apixoban

Steve

in reply to Sfhmgusa

Yes, the doctors I have spoken to fully endorse what you are saying. I'm going to have to take it-it's a matter of when.

Sfhmgusa profile image
Sfhmgusa in reply to

I am a clumsy, wet shaving, bramble walking through, car mending, bloke. Honestly the apixoban tabs are really innocuous to take

in reply to Sfhmgusa

Yes, you are undoubtedly right. It's really just a fear of the unknown.

RoyM profile image
RoyM

Taken Apixiban for 5 years with no issues whatsoever. I am also in Permenent AF and have been since 2016. Cheers

in reply to RoyM

Thanks for replying.

Desanthony profile image
Desanthony

I have been on apixaban for nearly 6 years and have had no problems with bleeding. I have actually not seen any difference in the time any scratch or cut stops bleeding and I am always cutting, grazing and scratching myself doing DIY around the house. I even bought some special plasters that some one on here recommended that help to stop bleeding and in the two years I have had them have never used them just an ordinary plaster when I need to cover anything to stop blood messing up clothes or bedclothes.

in reply to Desanthony

That is encouraging. Thanks for the reply.

manabouttown profile image
manabouttown

The thing to remember is that apixaban doesn't stop clotting ,it slows it down,so forget about the threat of bleeding to death in your sleep.I'm on 20mg of Xarelto once a day WITH FOOD and thank God haven't had any serious side affects.

Good luck with your help and keep on talking with your Cardio until you are satisfied .

in reply to manabouttown

Thanks!

Jancam1 profile image
Jancam1

Look at getting the watchman. Then Don t need any anti coagulants. Best thing I ever did.

in reply to Jancam1

Are you in the US? I'm not sure what the criteria for this procedure are.

Jancam1 profile image
Jancam1 in reply to

YES I AM IN THE US. HAD TWO BLEEDS ON BLOOD THINNERS. HAD THE WATCHMAN IMPLANTED, AND BEST dECISION ever mde. Look it up on internet.

Buffafly profile image
Buffafly

Bleeds on the brain are often the result of trauma or an undiagnosed blood vessel malformation, not helped by high BP. They can be treated. Once when I was in an obs ward for AF the woman in the bed opposite was in there with me for most of the day. Eventually a doctor came in to tell her her scan showed a small brain bleed and they would transfer her to another hospital an hour away. Our vicar’s wife continued with her duties for days with a dreadful headache be fore dying of the brain haemorrhage that was causing it. So provided you don’t ignore red flag symptoms or have a severe head trauma I think you’ll be ok 💜

in reply to Buffafly

That's an interesting reply. A *bit* reassuring.

Samazeuilh.You seem like a man who is uncomfortable with uncertainty.

My advice would be that for you, warfarin could be a better choice than a DOAC.

DOACS are inferior to warfarin if the INR is kept within the therapeutic range more than 80% of the time. This is easily achievable if you are a creature of habit, confident using a Coaguchek monitor and aware of potential interactions with new or temporary medication.

DOACS give better results for most people according to large multi centre trials. My guess is that poor monitoring of warfarin dose underlies this. DOACs can not currently be routinely monitored and for me that is an issue.

When I reach 80, my Apixaban dose will be halved overnight because population studies recommend this. But it isn’t personalised medicine. Go figure….

In summary, intelligent control freaks like me will appreciate the certainty that warfarin can bring.

And when I am 80 I will insist I go back on warfarin.

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