Pride comes before a fall! Anticoagul... - Atrial Fibrillati...

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Pride comes before a fall! Anticoagulant thoughts.

Threecats profile image
45 Replies

Good evening everyone,

Well there I was, floating on my little cloud of self-satisfaction, thinking I’d kicked the AF monster good and proper once I got my sleep apnoea under control. My nightly AF episodes became a thing of the past - bliss!

You all know what’s coming next though, don’t you. That monster was just lying in wait in the long grass! It popped up a fortnight ago with a couple of random episodes during the day. The coup de grace came last Saturday, when it started in the afternoon and as I type, is still happily chuntering away 5 days later🙄 I only take Bisoprolol 1.25mg but fortunately, upping the dose of that to 2.50mg is keeping my heart rate between 80 - 110 most of the time.

I have an appointment with my GP next Monday to discuss anticoagulants. I only score 1 for being female, so haven’t gone on them yet but, in view of the length of the latest episode, I think I need to have that discussion. I have another health condition and have been told that, even if I have an ablation, it won’t hold for long and I will end up in permanent AF. As it’s pretty certain I’ll be on this stuff for the rest of my days, I’m thinking I would prefer Wafarin as an AC , with a view to self-testing, as I know some of you do. I don’t travel, so think the Wafarin would suit in that respect, plus the fact one can monitor what’s going on and it’s been knocking about for years appeals to me much more than the take and forget approach of NOACs. Maybe it’s just the control freak in me😂 Whether the GP will be amenable is another question!

If you’ve made it this far, I would be interested in hearing any thoughts on my proposed choice and, indeed, experiences of living with permanent AF would be welcome, too.

Thank you!

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Threecats
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45 Replies
rosyG profile image
rosyG

you're managing this well.Look at theChadvasc scoring to see if you need anticoagulation and if you do start quickly Changed from wafarin to apixaban some years ago and am much happier with it even though I was self testing and adjusting on warfarin Stopped feeling like a patient!you do need blood tests with DOACS but infrequently

Threecats profile image
Threecats in reply to rosyG

Thanks RosyG . I struggle walking up inclines at the moment, mainly chest pain is the problem there. I’ve got a private EP appointment a week next Saturday, so will discuss that then but otherwise things aren’t too bad. Interesting to hear your experience of changing from Wafarin to Apixaban, thank you for sharing that.

sassy59 profile image
sassy59

Just want to wish you all the best Threecats and hope you make the right choices. Pete and I are on Rivaroxaban which is working well so far. I’m also doing well on Bisoprolol and managing the AF. Xxxx

Threecats profile image
Threecats in reply to sassy59

Thank you Sassy. Good to hear you are doing well and managing your AF on the Rivaroxaban and Bisoprolol. All the best to you and Pete too. Xxx

mjames1 profile image
mjames1

You may not need AC's, however sounds like your priority now should be finding a better way to convert your episodes.

It's good that you got your rate under control with bisoprolol, however as you get near the 7-day mark, you're leaving paroxysmal territory and entering persistent land. At a certain point in persistent, future interventions such as an ablation may be less effective.

Depending on the frequency of events, you may be a good candidate for an anti-arrhythmic like Flecainide either on a daily or pill-in-pocket basis. It can stop an episode in minutes to hours, keeping you well in paroxysmal land. An ep or a well versed cardiologist would be the one to speak to about this, as opposed to a GP.

Meanwhile, if you're getting close to seven days of continuous afib, an electro cardioversion may be in order until you come up with a medication strategy. You really don't want to stay in afib too much longer.

Jim

Threecats profile image
Threecats in reply to mjames1

Hi Jim

Thank you for your reply.

Yes, I agree that finding a way to convert episodes would be best, although always self-converted prior to this latest episode. As I said in my original post, CPAP therapy had knocked my episodes pretty much on the head, so was only taking a low dose of Bisoprolol up until this most recent event. Unfortunately, I don’t think I can take Flecainide due to some structural changes on the right side of my heart. I have a private EP appointment booked for Saturday week, so hoping he might come up with some suggestions!

Thanks again

Sharon

mjames1 profile image
mjames1 in reply to Threecats

I don't have to tell you that the way afib behaves can change on a dime. For years I also converted fairly quickly with rate control and then all of a sudden I didn't. And then I didn't again and again. That's when I decided on anti-arrythmic to get back into NSR while deciding on having an ablation, which I'm planning on soon. Yes, Flecainide requires a structurally sound heart, but if you don't qualify there are other anti-arrythmic's you can try and then of course there is ablation. And again, in the meantime, you can always ask about an electro cardioversion. They don't always hold but might hold long enough t buy you more time to come up with a more permanent strategy.

Jim

Paulbounce profile image
Paulbounce

Hi Threecats.

Warfarin is a well-established anticoagulant that has been used for many years, and it can be self-monitored with regular blood tests to ensure the dose remains effective. Newer anticoagulants, such as NOACs, have the advantage of not requiring regular blood tests, but they have a shorter history of use.

I think only your doctor can decide what's best for you. Some members here are very pro-Warfarin - BobD being one such example.

This is just my opinion and something to discuss with your doctor. Personally, I would want my HR a little lower than 80 - 110. Although 110 is not life-threatening it's still a little high IMO. I would ask my doctor about increasing the bis dose slightly.

As for being in permanent afib - it wouldn't bother me that much as it's highly likely your body will adjust in maybe 3 or 4 months. I would though want to be on an anticoagulant then for sure - no doubts.

I would also ask about the mini maze. This is my go-to right now. I'll update the forum about this in the very near future.

Paul

Threecats profile image
Threecats in reply to Paulbounce

Hi Paul

Thank you for your reply. I do agree with you and would like my heart rate a little lower too. However taking more Bisoprolol is making me rather dizzy. Hopefully, the chap I am seeing next week will have some solutions! As for my GP and the anticoagulant question, I am not certain her advice will be based on what is best for me rather than what is cheapest for the NHS but maybe I am just getting old and cynical!

I look forward to hearing more about your mini maze enquiries.

All the best and thanks again.

TC

Paulbounce profile image
Paulbounce in reply to Threecats

Hi TC

'I am not certain her advice will be based on what is best for me rather than what is cheapest for the NHS but maybe I am just getting old and cynical'

I don't think you are being cynical sadly. You could try splitting the bis dose morning and night. If it makes you feel dizzy take it before you go to bed. Also taking it before you eat will slow the absorption rate and may reduce the dizzyness. Check these points with your doctor first but they may help.

Paul

Edit - meant taking it AFTER you eat not before.

Threecats profile image
Threecats in reply to Paulbounce

Thanks for those tips Paul. Having the Bisoprolol after food is something I will try - been having it on an empty stomach up to now.

Paulbounce profile image
Paulbounce in reply to Threecats

Hi TC. I think you may find it helps. Speak to your pharmacist first to double check but you should be good to go.

Paul

Threecats profile image
Threecats in reply to Paulbounce

I will, thanks Paul.

Singwell profile image
Singwell in reply to Paulbounce

Oh this is exciting. I knew you were planning it for needed but didn't realise it might be sooner rather than later.

Paulbounce profile image
Paulbounce in reply to Singwell

Hi Sing.

Alas, I'm not nowhere near getting one yet. However, I am following everything up and 'working behind the scenes' as they say. I won't hold my breath but will try my best 😉

Paul

Jalia profile image
Jalia

Hi, I've been on Warfarin for at least 20 years and consider it to be my friend! I've had my own Coaguchek self testing kit for many years as well so keeping check of my bloods is no problem and second nature to me. My EP sees no reason for me to switch to one of the DOACs as this works for me.

I'm always being asked by medics when I'm in hospital why I'm still taking old fashioned Warfarin! My reply is along the lines of ' if it ain't broke why fix it !'

in reply to Jalia

Agree 100% Jalia. I too am being hounded to change from Warfarin to these new fangled things. My answer is the same. I also throw in ........ how do you know these DOACS will not give me more trouble than Warfarin has ever done ! The money world of Big Pharma at work yet again.

John

Threecats profile image
Threecats in reply to Jalia

Thank you Jalia, that’s good to know! I totally agree with your maxim😊

Hiya Threecats,

Sorry to read of your new dramas ........... this AF thingy always mugs ya when you least expect or want it to.

To your subject matter.

At the time my AF was diagnosed in January 2010 my average HR was constantly and consistently around 88 to 95 BPM. Probably small wonder AF mugged me as it had been like that for some years but nobody ever clocked it and dealt with it. Then there are genetic issues behind my AF too.

When my Cardiac Consultant got his hands on me he put me straight away on 5mg dose of Bisoprolol as a heart rate control drug. That managed to hold my HR at 64 to 67 bpm and has done all these years and I believe has ensured that my AF events have been minimal, decreasing to one or two a year .... that along with a diet from a Nutritionist.

It is still pumping away at 64 to 67 bpm. Occasionally at night it drops down to about 53 bpm and on rare occasions down to 46 bpm.

My GP tried to fiddle with the dose to deal with blood pressure and put me on 7.5 mg. Well that was a bloody disaster as all it did was make me the Zombie from the Land of the Living Dead ......... so back to 5 mg, which I did myself without her prior approval ... although I told her after the event. She told me she didn't approve and I retaliated by saying well what do you expect me to do with the rotten NHS the way it is and you being so inaccessible !

So be aware that Bisoprolol might have an impact on BP if you traditionally suffer from low BP. Also when first put on it I was put on it to be taken with my morning meds and developed full flow random nose bleeds. Returned to my GP who then told me to take it at night with my Warfarin ....... did this and nosebleeds not only stopped but I've never had one since. I suggest if you go as high as 5 mg they be taken at night. Its quite a naughty powerful little demon,

As Warfarin works for me brilliantly I would never ever take a DOAC. As far as I am concerned they have ONLY gone through the required mandatory of stages of development to get them into the market place. They are not proven over the long term as is Warfarin even with its disadvantage of constant INR testing. My GP has tried to get me to change but I have equally been insistent and refused ! I read more and more on this forum of some people having more and more issues with these DOAC's and have returned to Warfarin.

If you try Warfarin it won't take you very long to master the dark arts of the drug, keep notes watch your diet ..... but whatever you eat and drink do it consistently ............ CONSISTENTLY .... its true what they say about dark green leaf veggies, but everything in moderation including alcohol. You'll need to get used to it chucking a wobbly every so often and you'll find your INR will either increase or drop for no obvious reason. Your INR clinic will guide you through that and eventually you'll know what to do yourself. Warfarin just adores consistency.

I get my test strips for my Coaguchek device as a regular NHS prescription. The last I understood that Roche ( who market Coaguchek XS testing system) will sell it direct in interest free monthly installments. £300 divided by 12 !

You may have to fight with your GP to get Warfarin be prepared to do so and for test strips on prescription. I've had many a battle with mine and have on one occasion I actually took my Hospital Trust to the cleaners and reported it to my MP with the request he take up my issues with the Trust with the Secretary State for Health. That does tend to weaken their resolve somewhat.

I lead a perfectly normal life with my Warfarin and INR testing, including going on holiday to Australia and rural Australia at that. Despite my age I still pass my medicals ( so far anyway) to renew my bus drivers licence and put in 30 hours a week as a part time double deck bus driver driving college students.

So if you go down the Warfarin road and you want any more tips then let me know and I'll offer you the benefit of my Warfarin journey. It is not the ogre Big Pharma and many patients delight in making it out to be. New is not always best.

Good luck,

John

Threecats profile image
Threecats in reply to

Hi John

Thank you so much for your comprehensive reply, it’s really helpful. I have tried upping the Bisoprolol a bit more to bring my resting heart rate down during the day but all that does is make me dizzy, as I imagine it’s pushing my blood pressure too low. I’m seeing an EP Saturday week so hoping he will have some answers!

As for the Wafarin, I’m a fan of consistency when it comes to eating!. Sometimes, remembering what I had for dinner the previous night is the only way I can work out what day of the week it is!😂I’ll get ready to do battle with my GP about the warfarin next Monday 😊

Thanks again for your reply.

All the best TC

Auriculaire profile image
Auriculaire in reply to

In the world of Pharma new is often only best for one thing- money spinning! Unfortunately my GP is a bit brainwashed when it comes to new and won't prescribd Warfarin so I have to make do with Apixaban.

MarkS profile image
MarkS

Hi Threecats, I'm another on warfarin and, despite having a very varied diet, I'm nearly always in range. The key is a consistent Vit K intake, either by pill or regular high Vit K foods such as broccoli or spinach. Warfarin seems quite benign compared with the DOACs. I feel empowered as I'm able to check my INR and adjust as necessary to stay in range.

I wonder if you could try alternatives to the bisoprolol? There are calcium channel blockers such as diltiazem which I got on much better with than bisoprolol.

Threecats profile image
Threecats in reply to MarkS

Thank you Mark, that’s good to know. I will be asking the EP when I see him next week about alternatives to Bisoprolol as I’m mildly asthmatic and am finding the extra Bisoprolol I’m taking is aggravating that rather.

beardy_chris profile image
beardy_chris

Hi Threecats, I'm on Apixaban. No problems, very simple, just take it twice a day, same pill every day, virtually no dietary restrictions. Some people worry about reversal but I had an accident and ended up in A&E with a punctured artery and they said they can manage blood loss with DOACs just fine (they aren't Novel any more!).

Personally, I'm glad not to be on Warfarin after I saw my Father's struggles to stay in range.

Tapanac profile image
Tapanac in reply to beardy_chris

hello. There is a reversal drug for apixabsn. I had a really bad fall and rushed to hospital with a brain haemorrhage. The doctors gave me the reversal drug through a cannula and all was fine

Best wishes.

Pat

Threecats profile image
Threecats in reply to beardy_chris

Thank you for that beardy_chris. I’m thinking along the lines of Apixaban if Wafarin is a no. Mind you, judging by what I’ve read on the forum, that could be a battle to get, too!

Nannysue1 profile image
Nannysue1

Hi there. I was in permanent AF for 3yrs and pretty symptomatic. I didnt get on too well with medications and indeed got really fed up putting them in my body. I couldnt get my heart rate down below 85- 130, without really high doses of medication which in turn made me feel awful. It was impacting on my life and I was miserable with the ups and downs of it all.In September last year I had a pacemaker put in, with no problems and in December I had an AV node ablation. I feel like I have my life back. I'm totally unaware of the AF, my heart is beating steadily at 70bpm and all is calm.

Just after new year I was hospitalised with the flu and secondary pneumonia infection ( despite having had both flu and pneumonia vaccines). My heart remained steady throughout the stay, with me on oxygen and being pumped full of antivirals and antibiotics with high temperatures. I was so grateful that at least, I didn't have the AF to worry about.

I know that the pace and ablate is a last resort treatment but for me it has been a positive result. Good luck with your on going journey with AF , it's a club that we all wish we werent members of!.

Threecats profile image
Threecats in reply to Nannysue1

That’s really interesting Nannysue, I did wonder about a pacemaker in the longer term and, whilst I’m very sorry to hear how unwell you’ve been, I’m very impressed that your heart rate remained steady throughout. I hope you have fully recovered now.

All the best to you and thanks again, TC

Nannysue1 profile image
Nannysue1 in reply to Threecats

Meant also to say that I was switched from Rivaroxaban to apixaban some 4 yrs ago and have had no problem with it at all.

Threecats profile image
Threecats in reply to Nannysue1

That’s good to know, thanks.

Ducky2003 profile image
Ducky2003

I have the opposite issue. I'm on Apixaban and have been for about 6 years but now the EP wants me to switch to Warfarin because of a possible condition he thinks would be better served on Warfarin.I was very reluctant as I don't want all the faff of blood tests (I'm not anywhere near retirement) or the expense of these testing doobries, unless the NHS supply them.

I'm waiting for an appointment with the anticoagulant clinic so will find out more then.

Hope your AF settles down.

Ang

Threecats profile image
Threecats in reply to Ducky2003

I’m sorry to hear you’re unhappy with the proposed switch, Ducky and can understand you not being keen on the faff of blood tests. I hope you get that appointment with the anticoagulant clinic soon.

All the best to you TC

RoyMacDonald profile image
RoyMacDonald

Been on Apixaban for 3 years no problems. You should be too as you have AF episodes. You don't want to risk a stroke.

Threecats profile image
Threecats in reply to RoyMacDonald

Thank Roy, indeed I don’t!

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I chose PRADAXA x twice a day after the stroke with AF caused by thyroid cancer (found 4 days later during a carotis arteries scan).

I was given 110mg dose.

Wasn't offered warfin.

But PRADAXA has an antidote if involved in an accident. Reversible.

There must be a lot of fear about "have I taken it and double dosing".

No internal or external bleeding. I've taken it for 3+ years. Thyroidectomy done 2020 and TVT Johnson & Johnson Mesh Removal March 2022.

I was H.Rate controlled finally December 2021 on Diltiazem AM Bisoprolol PM Controlled.

cheri JOY. 74. (NZ)

Threecats profile image
Threecats in reply to JOY2THEWORLD49

Hi Joy,

Thank you for your reply. I’m glad the Pradaxa has worked well for you without incident

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply to Threecats

Hi

Yes the new anti.... are regarded as safer.

And if there is any ? about 1 of the doses taken or not taken I err on the side of

taken and therefore wont double take even the 1/2 day dose.

PRADAXA comes in 110mg or 150mg twice day.

I understand over 60 gives you another number 2 then AF gives you to 3 risk.

I've included the female.

I had stroke, AF and thyroid cancer. At 70 then.

3 years plus later has left me with a lazy tongue which affects my speech on some words and I still cannot knit. Fatigue on exertion.

Stroke usually is caused by 2 things like anxiety and high BP or alcohol binging/over sports/over eating (vagil AF).

cheriJOY. 74. (NZ)

Threecats profile image
Threecats in reply to JOY2THEWORLD49

Thank you for the further info Joy. I’m sorry to hear how your stroke has affected you, that must be frustrating for you. I’m 58 and don’t have any comorbidities that affect my Chadsvasc score, other than being female. Bit anxious that I’m now on day 7 with no sign of this latest episode going anywhere anytime soon🙄 but never mind, it could be worse!

All the best to you, TC

solarjdo69 profile image
solarjdo69

Hello Threecats! We have four pussycats at our home too. I'm sorry to hear that your AFIB has returned. I had my AFIB diagnosis in fall of 2014. I had been on the rat poison (Warfarin) for about 6 months. I lean towards natural remedies and after much research decided on Nattokinase. I take it either twice a day 200FU or 1 400FU (2x200) before bedtime. It is known by the nih.gov united states as one of the more potent clot dissolvers. I've never regretted that decision. 8 years and counting and I'm fine. The only prescription I take is diltiezem 250ng x2 each day. So far have not been able to go long term without it, but working on it.

From WebMD.com

Studies show that nattokinase dissolves blood clots — which helps maintain good blood vessel structure, improves blood flow, and lowers the risk of heart disease. It can also help lower your blood pressure, reducing strain on the heart that can lead to heart attacks.Nov 26, 2022

It is considered best to take Nattokinase after dinner or before sleep since thrombus is more likely to be produced around the mid night to the early morning.

How long does it take for nattokinase to work?

When dogs were orally administered four NK capsules (2000 FU/capsule), chemically-induced thrombi in the major leg vein were completely dissolved within five hours and normal blood flood was restored.

Nattokinase: An Oral Antithrombotic Agent for the Prevention of Cardiovascular Disease

ncbi.nlm.nih.gov/pmc/articl....

Let me know if I can be of assistance. The brand I use is Drs Best which I buy on-line from either Amazon or vitacost.com

Good luck. My thoughts are with you.

Threecats profile image
Threecats in reply to solarjdo69

Hi fellow cat lover solarjdo!

Thank you for the Nattokinase info and for linking the study, too. I shall certainly look more into that.

All the best to you, TC

whats profile image
whats in reply to Threecats

I also take nattokinase, only after I discovered that apixaban caused itching I couldn't bear. I take one (100mg=2000FU) in the morning, one midafternoon and one at bedtime also one half of an eliquis tablet which is the most I can take without itching. My understanding is that the problem with nattokinase and all non-prescription supplements is that you can't tell what dose you are getting as there is no oversight of supplements. It seems there should be a better solution than the regulatory agencies throwing up their hands and saying we are on our own in the wild sea of claims and counter-claims, but alas.

Threecats profile image
Threecats in reply to whats

Thank you for your input Whats. It’s interesting to hear your experience. Yes, that is the thing that concerns me with supplements, particularly in this situation, in that you can’t tell what dose your having and whether what you are taking is a therapeutic dose. More researching to be done over here!

All the best and thanks again, TC

kocoach profile image
kocoach

Hello Threecats, if you like to eat vegetables (or) food as much as I do I did some research and found out apixaban does not have any food interactions as warfarin does, ( vitamin k which is found in lettuce and some other green vegetables). I am on apixaban for about three years now and my post last week on this forum reinforced my acceptance of apixaban. I was terrified of the word anti-coagulant and fought taking them for years but finally gave in and so glad I did. I now have more peace of mind regarding stroke prevention and that's less to worry about. Hope this help's. Have a Blessed day.

Threecats profile image
Threecats in reply to kocoach

Hi kocoach,

Thank you for your reply, it does help . I do like my veggies for sure. I recall your previous post and your Apixaban test 😊 I hope your head has recovered now!

All the best to you, TC

Threecats profile image
Threecats

Well I’ve got precious little control over my AF, so having something I can control appealed! 😊 I appreciate Wafarin isn't for everyone though!

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