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Atrial Fibrillation Support

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Related to Anticoagulants

NeilCrowley profile image
28 Replies

Hello all, this is my first post and have learned alot from others here. My question seems basic and one could wonder why I have not received a good answer. I have had intermittent AF for 25 years. For the most part, it has been controlled by meds, several over the years. With a few exceptions conversion has been obtained by pills. Rythmol generic has worked the best. I had an ablation 18 months ago that did very little other than teach me that I am addicted, in a sense , to atenolol, though little about this came from doctors. I take atenolol 50 x2 and rythmol generic 225 x 2 per day. But, my question relates to Eliquis which I started just after the ablation. Aspirin was my thinner for 22 years. I believe from what I read that Eliquis increases my risk of a stroke if I go off of it. What is written is unclear as to if the increased risk is due to the risk of stroke via ones AF or is it the pill itself that has this withdrawal risk. I think it is the pill. My question is finally..If one were to slowly decrease Eliquis to reduce this risk, and one is not in AF is the stroke risk lower if AF is not present. I understand the conservative approach of reducing any risk but Eliquis is unpleasant, expensive(not a big issue) and another strong med in my system I'd like out. Though not untrusting of my docs I have felt at times that a med or a procedure being presented to me was less about me than it should have been. I can take the eliquis but I want to understand why. Thanks Neil

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NeilCrowley
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28 Replies

Hello Neil, we may have a different view here in the UK but aspirin is not recognised or recommended as an anticoagulant. The need to be anti coagulated is determined by the patient’s CHADsVASc score and once AF has been diagnosed, anyone with a score of 1 or above is encouraged to take an anticoagulant for the rest of their life. This generally applies even if someone has had a successful ablation or their episodes are infrequent. The reason is that there is no cure for AF and that it can occur at any time, day or night and the patient may not even be aware also the jury is out as to whether the risk of stroke changes whilst in sinus rhythm. This because the structure of the heart is such that blood clots may develop in areas where heart tissue may be damaged. Of course, the final choice has to remain with the patient but most people feel that the risk of having a debilitating, life changing stroke possibly requiring 24/7 care from their loved ones is not an option they want to contemplate......l

NeilCrowley profile image
NeilCrowley in reply to

Hello and thanks for reply. The general view is the same as your in the states. This site confirms the wade variety of advice given by Docs. My cardiologist love my use of aspirin until to protocol changed then it was on to Eliquis. I felt I was getting unclear answers related to risk when no AF was present. You explanation is helpful re damaged tissue and ongoing risk. Thanks.

BobD profile image
BobDVolunteer in reply toNeilCrowley

Aspirin was removed from our governmental (NICE) recommended list in 2014 because the limited benefit was far outweighed by a greatly increased risk of harm such as gastrointestinal bleeds. It seems money won over for a while in USA but common sense is now starting to filter through.

etheral profile image
etheral in reply toBobD

Considering the insignificant cost of Aspirin compared to Eliquis this makes little sense. Aspirin is an antiplatelet drug that may have some benefit to those with Coronary artery disease but has no benefit to preventing strokes from cardiac embolism. Doctors who continue to prescribe it for this purpose are misinformed or worried about potential malpractice suits.

BobD profile image
BobDVolunteer in reply toetheral

Agreed it has a place in some cardiac conditions. Just not AF where it's potential for harm far exceeds any prophylactic effect on stroke.

lizardo profile image
lizardo in reply to

Fabulous reply Flapjack. You are obviously well versed with AF. I take Eliquis and have absolutely no issue with it. As an ex pharma rep and also ex nurse Eliquis is my NOAC of choice. Fortunately both my cardiologist and GP know I am also very knowledgeable regarding medications and they always, well nearly always give me a choice as to what I want to take because I know it is going to be a lifetime medication. The thought of having a stroke really puts the fear of God into me. If I ever have one may it be a good one and it knocks me off this planet. As I live on my own and have no family support, the alternatives are not what I would want. My first boyfriend 55 years ago had a whopping stroke the other day and he did not recover. This was the best option for him because he wouldn't have coped with a disability as he was always a fighting fit man, but he had AF and the possible consequences of this terminated his life at 72. Incidentally he was very handsome too!

Violetta25 profile image
Violetta25 in reply tolizardo

Sorry to hear about your old boyfriend. Regardless of your relationship now it's always a little sad to lose anyone you've loved at some time.

You may find some answers here

stroke.org.uk/sites/default...

AF is associated with an increased risk of cardioembolic stroke; all other things being equal, the risk is 5 times greater.

Taking an anticoagulant(AC) is believed to reduce your risk of AF related stroke due to clot from your heart by 60%. The clot is thought to form because of turbulence in the chaotically contracting left atrium. Obviously if you stop your AC, you are unprotected and more likely to have a stroke (as before).

Evidence about stroke risk if AF burden is reduced with treatment is conflicting but at present the advice remains that the stroke risk remains undiminished and that ACs should continue lifelong, however counterintuitive that might seem.

It is true that there is a small risk of haemorrhage with ACs but advice to take them is based on calculations of benefits vs risk.

If Apixaban does not suit you, maybe you could try another AC.

NeilCrowley profile image
NeilCrowley in reply to

Thank you for this useful reply.

NeilCrowley profile image
NeilCrowley in reply toNeilCrowley

sorry about typos..must be the beta blocker

jeanjeannie50 profile image
jeanjeannie50 in reply toNeilCrowley

Hey, now that's a good excuse, which I must remember! Made me laugh.

Alessa69 profile image
Alessa69 in reply to

Great info, as ever here! Once diagnosed with PAF post Ablation last year, I was so relieved to be taking NOAC, in my case Rivaroxaban, and to ditch the low dose aspirin. They kept me on both for 10 days by mistake, until I double checked with Cardiologist, found interesting amounts of blood when I cut my finger chopping veg when I was taking both! Much easier now. Good Luck with all

etheral profile image
etheral

It is not the effect of Eliquis being discontinued that increases your risk of stroke, but rather losing the protection it affords from throwing a clot due to afib or cardiac abnormalities.

Hilly22 profile image
Hilly22 in reply toetheral

Hi ethereal. I've been confused about the issue of suddenly stopping anticoagulants, e.g. before surgery. As mentioned by NeilCrowley , the information available on increased stroke risk in that situation isn't clear. The NHS website states that if you stop taking your DOAC, you are back to where you were before you were protected, but I've read things on other sites that warn of the dangers of suddenly stopping because the blood will become sticky, increasing the stroke risk.

I've tried to find out more from the manufacturer but the only information available to patients is what's on the patient information sheet. I had a long chat with my pharmacist but he didn't have the information either. Next time I see my GP I'm going to put the question to him, as I think it's important to know the answer before deciding whether or not to go ahead with non-life-saving surgery. Would appreciate any information you or others may have.

MarkS profile image
MarkS in reply toHilly22

Hi Hilly2,

There is an increased risk of strokes and particularly severe strokes on stopping the new anti-coagulants. See:

ncbi.nlm.nih.gov/pubmed/306...

This showed that for a few weeks after stopping NOACs there was an increased risk of severe stroke due to the NOACs inducing a hypercoaguable state on withdrawal.

Mark

Hilly22 profile image
Hilly22 in reply toMarkS

OMG! Thank you Mark, that information is so appreciated, and alas, as I suspected. We should all be aware of this when making decisions on whether or not to have unnecessary surgery which requires stopping our NOACs.

I was recently told by a consultant that I’d need to stop taking Apixaban for 5 days before having an infected epidermoid cyst removed from my back - a ridiculously long time which I would have questioned had I decided to go ahead. Glad I’ve chosen to stick with large doses of antibiotics instead!

All the best

Hilly

MarkS profile image
MarkS in reply toHilly22

Yes Hilly, that is an unnecessarily long time. On warfarin I just get my INR down to 2 and my consultants are happy to remove cysts/BCC's etc.

Best wishes

Mark

Hilly22 profile image
Hilly22 in reply toMarkS

That's a huge point in favour of Warfarin.

H x

Polski profile image
Polski in reply toHilly22

Rivaroxiban should not be taken when having surgery to the back. Bleeding into the backbone area can cause paralysis, so five days is a very sensible precaution.

Hilly22 profile image
Hilly22 in reply toPolski

Thanks Polski, that's interesting and maybe explains it, but the cyst is about 4 inches to the left of my spine and just below the skin. Quite deep though, so that must be the reason.

I've learnt so much from here today :-)

Hilly22 profile image
Hilly22 in reply toMarkS

P.S. The link deserves its own post! :-)

NeilCrowley profile image
NeilCrowley in reply toMarkS

thank you Mark. That's the information I was seeking. It a shame one has to search rather than hear it from a physician.

momist profile image
momist

Just as an additional comment. There are some in the medical community who regard AF as concomitant to, rather than the cause of, the increased stroke risk. The phrase used is often "it is not the AF, it is the company it keeps". This infers that the stroke risk remains even if the AF is prevented/suppressed by treatment. As BobD said, there is no cure. Personally, I wouldn't take the risk of going without anticoagulation.

Mary-miles profile image
Mary-miles

I really do think we can become addicted to atenolol.It took me 5 months post ablation to get off it.Eventually I was down to 6.25mgm every day for weeks before I was finally able to stop it.I don’t know if it was anxiety that made it so difficult but I did feel a feel my heart skip a few beats until one day I said that’s it I am done.No more A/F .I am on rivaroxaban and will stay on that until something better comes along .The side effects are better than a stroke.I believe every time we can stop taking a medication the more we can heal ourselves,with diet,lifestyle and less worrying about all the nasty side effects of meds.

NeilCrowley profile image
NeilCrowley in reply toMary-miles

amen

Melchet profile image
Melchet

I initially had headaches, neck & shoulder pain when taking 2x5mg/day Apixaban, but it settled down after a couple of weeks and I'm not aware of any side effects now. I too would like to know if there is any rebound effect when stopping Apixaban suddenly. My experience is that the practitioners are quite happy to stop it for wisdom tooth extractions, endoscopic examinations and other procedures, whereas general medical advice to the patient is don't stop it on pain of death!

My mother-in-law aged 90 was put on Clopidogrel (an antiplatelet medication, not NOAC) to protect against stroke following a heart valve replacement. Sadly, three months later she was struck down by a haemorrhagic stroke ie. brain bleed rather than the more common clot in the brain. They stopped the Clopidogrel pretty quickly, so now she's at risk of a conventional stroke. To be fair not an easy balance to make in her case, but following PVI cryoablation for PAF 6 months ago, I am prepared to continue taking Apixaban for life.

kathie659 profile image
kathie659

I'm on pradaxa. Dr. Says I can stop taking it. Stroke is a tremendous fear for me. I'm staying on it. That said, pradaxa has an antidote if bleeding became an issue. Also I do a lot of home improvement, so I get minor cuts often. To date, I've not noticed an increase in bleeding (except when I get urinary type infections). I would rather continue pradaxa than worry about stroke.

inezelsie profile image
inezelsie

Hi Neil, I'm curious about the side effects you have felt after taking Eliquis. I have been having a lot of muscle and joint pain and frequent headaches. I was blaming it on a different medication, one for glaucoma, but I wondered if these are the symptoms you experienced with Eliquis. I've been taking Eliquis since last July and I really didn't think I was having any problems until the last 2 months, which was about the time I started the new glaucoma medication. I decided to stop taking that medication, timolol, and see if my symptoms improved, but they really haven't changed much. I stopped taking it a week ago so maybe it hasn't been long enough anyway.

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