any advice on choice of blood thinners please ?

[smwdorset]

unfortunately the Kardia mobile I bought ( thanks so much all of you for the advice on this) has confirmed that I am having regular episodes of AF ( bit not this time fast AF) followed by SR with ( sequentially wide QRS and PVCs and Supraventricular ectopy. This latter now appears to be the default position. ) my GP contacted my Cardiologist who has told her to put me into either 60mg of edoxaban OD or apixaban 5mg BD or rivaroxaban 20mg - he doesn’t say if this is OD or BD

The GP is asking me to start on the rivaroxaban - with no explanation of the differences or reason for choosing this one ( ?? Cost?)

Do any of you know what the relative risks and side effects are

I am a bit wary as in recent major surgery I had heparin induced thrombocytopenia . But I guess these other drugs might work differently ?

He doesn’t actually suggest any other treatment unless I become symptomatic - what does that mean

Any advice or pointers as to where I might find out relative merits of these three drugs would be appreciated

Thank you

[Hidden]

According to the medical experts, there is very little difference between any of the anticoagulants you mentioned. In terms of side effects, like most medications, the manufacturers list of possible side effects is as long as your arm but the reality tends to be a lot different. They do it to mitigate themselves against the risk of legal action. As I understand it, whilst all variants have gone through all the hoops necessary to satisfy the powers that be of their efficacy, very few tests have been carried out to establish any differences between them. One significant difference is that Rivaroxaban must be taken with a full meal (not just a snack) as this is the means by which it enters the system to offer the level of protection necessary. I have taken Apixaban since about 2015 and have not experienced any problems.

Below is a link to the NICE guidelines lines for all anticoagulants and it should provide you with all the factual information you should need, hope this helps……

cks.nice.org.uk/topics/anti...

[smwdorset in reply to Hidden]

Brilliant thank you!

[bantam12]

I chose Apixaban as it seemed to be the one most people preferred and easily tolerated. I’ve been on it nearly 3 years and no side effects or problems.

[smwdorset in reply to bantam12]

Thanks - interesting I wonder why my GP appts for rivaroxaban as the cardiologist suggested all three possibilities

[Ducky2003 in reply to smwdorset]

Cost, I would imagine. I'm sure that someone posted recently that Rivaroxaban was cheaper.

[Suesouth in reply to Ducky2003]

Rivaroxoban is more expensive,that’s why lots of GP’s are changing to Edoxaban

[Ducky2003 in reply to Suesouth]

Ok. I thought I'd seen someone say it was cheaper recently.😊.

[mrgwair567]

Hi , I have taken Apixaban for 6 years with no problems or side effects.

[mjames1]

You said: He doesn’t actually suggest any other treatment unless I become symptomatic - what does that mean

--------------------

He's saying you don't have any symptoms. Do you? Would you know you're in afib if you weren't looking at the Kardia? If so, what kind of lifestyle burden is afib in your life right now? For example, I know someone who got diagnosed with afib by chance who has a normal heart rate, even with activity and has no symptons. His doctor ran some tests, gave him an anti coagulant and said go on and do whatever you usually do. He's in permanent afib.

Jim

[smwdorset in reply to mjames1]

Hi not sure if my previous post worked. Yes I know I’m in AFib - that’s why I bought a Kardia I had persistent AFib until

Ablation 6 yes ago.

Main difference now is that HR is c 100 instead of 200

I can’t walk uphill or long distances - my main exercise as I have osteoporosis post cancer treatment so it’s not good for my general well-being

Not sure if cardiologist is saying this just because I old and he can’t be bothered to treat me . I wonder if recent heat plus stress from illness plus daughter going into end stage kidney failure has triggered this ! Monotjerapy change in lifestyle ‘

[Buffafly in reply to smwdorset]

He is saying that because a HR below 100 is considered normal so if your HR averages that you don’t need medication unless the HR is causing discomfort, in which case you would probably be prescribed something to slow your HR a bit.

I was originally prescribed Rivaroxaban but it didn’t suit me. I am very happy with Apixaban although it has to be taken twice a day whereas Rivaroxaban is once a day.

[smwdorset in reply to Buffafly]

Do you mind me asking inWhat wAy it didn’t suit you . A bit weird that one is ok and the other not because I thought they all

Worked the same way in essence

[Buffafly in reply to smwdorset]

I have bowel problems and sometimes need to fast to allow things to settle down. So having to take my medication with food didn’t suit me, and though you can take it without it then gave me stomach problems. Only after I stopped taking it did I realise that I felt much better without it! There have been reports from the USA of ‘adverse events’ as well. I like Apixaban because of the shorter half life, no dietary restrictions, and I don’t have any side effects that I can notice. They all have the same effect but the formulation is different..

[smwdorset in reply to Buffafly]

V helpful and thanks for sharing . I have had bowel cancer so have only half a gut so I think I willAsk for apixaban as I too sometimes have to fast

Kr

[mjames1 in reply to smwdorset]

I see. Well, you could ask the gp what he means by "symptomatic", but given your history, sounds like you should be talking to an ep about all this, not just a gp or cardiologist.

Jim

[smwdorset in reply to mjames1]

You are quite right - the weird thing is that it’s the EP who gave the advice to the gp who sent him my Kardia traces . He’s one the of country’s leading authorities on AF at Barts . It’s eels to me a bit off to put me on these drugs without seeing me and without talking to my valve cardiologist . I guess they are all b under pressure catching up the backlog ! I will try the link again in the morning and see if it works then - the server may be down Sleep well

Thanks again

[Deary63 in reply to smwdorset]

Reading your post and wishing you well .. just interested was it prof Shilling at Barts .. I’ve been under him for years (30) his brilliant, as I suffer with ectopic beats badly ..To be honest all the EP team are great .. Iam sure what they are prescribing will help !

All the best

Sue

[smwdorset in reply to Deary63]

Thanks and yes it is! But he offered a choice of three - rivaroxaban Eden’s an and apibaxan hence my question !’

[smwdorset in reply to smwdorset]

Edebaxan I mean of course !

[Ewloe in reply to smwdorset]

Hi I’ve worked for the Nhs for many years ( I’ve finished this year on heart issue grounds), and I’ve heard doctors speaking with other doctors about patients over the phone. Yes I listened to what was being said- not too be nosey but I’d learnt that very often what the doctor told the other doctor was his opinion and not actually what the patient had said or felt. Luckily we had a jump call procedure so a few times I myself ( not a doctor) spoke with the doctor on the end of the phone to explain things from the patients side which did result in a different treatment. I’m not slagging off your gp ( who’s not a specialist) but they will develop an opinion of things having spoken with you and it’s often this opinion they discuss with other doctors/specialist’s. So if the gp thinks you’re not really having symptoms to take note of he might not express them to a specialist.

If you can speak with the specialist yourself. Or even send a letter. Good luck.

[smwdorset in reply to Ewloe]

Good idea thanks

[Ppiman]

It won't be cost since rivaroxaban is, I believe, the priciest but I think they are all much of a muchness. It is, I think, currently the recommendation from NICE, the body who judges these things. It's convenient at once a day, and, I gather, all main hospitals now have stock of the reversal agent. It has to be taken with a meal. I take mine at breakfast, but I gather in the USA it is recommended to be taken with a full evening meal. My own doctor says any kind of food is fine, but I have heard people suggest a fatty meal is best. The research isn't very convincing that the kind of food makes much difference at all.

Steve

[Sputnik56 in reply to Ppiman]

I, too, take my Rivaroxaban with breakfast (since 2019) as I was never told otherwise and the info leaflet does not specify to take with evening meal. Now I'm panicking that it might not be giving me the protection I need. Gonna have a chat with my pharmacist to see if I should change timings??

[Ppiman in reply to Sputnik56]

Don’t worry. I was told that the US recommendation came from the FDA as the drug was registered earlier there before quite as much was known about its absorption. The cardiologist who prescribed it told me with breakfast was ideal.

Steve

[Mainman]

When my cardiologist put me on Apixaban he summed it up quite nicely by saying its no problem in you cut your finger in the kitchen but....if you have a car accident it is!

[Tellingfibs]

I notice Warfarin isn’t mentioned. I can’t take the ‘newer’ anticoagulants mentioned because an echocardiogram showed slight leakage with the Aortic valve and the Mitral valve. Have you, (and the group following your post ) had heart scans ?

[Ducky2003 in reply to Tellingfibs]

That's interesting as I have been on Apixaban for about 4 years. They have discovered a problem with the mitral valve so I am awaiting repair surgery but I am still on Apixaban and no mention of having to change that. The only mention of warfarin was if the valve needs to be replaced rather than repaired.

[Tellingfibs in reply to Ducky2003]

I was beginning to think quite a few people here were on the newer anticoagulants, but when I mentioned it to my cardiologist he said ( as I have mentioned in a post before sometime ago ), he said “ if you were my mother, I would want you on Warfarin”. I am confident with his care and I guess he sees ‘ the whole picture’. My brother was on Warfarin for years, living in Spain, but now he is living in the UK, he has been put on Apixaban and is thrilled not to have INR checks ! But I don’t think he has leaky valves, which is pretty good as he is 74. I am 70 and my GP says it is very common with advancing age and is not a problem if it is mild to moderate - it all depends on the heart function. However, if you look at the contra- indications for the use of the newer anti-coagulants, leaky valves is one of them. But we all have to remember that we can’t possibly understand all the details that make up our individual conditions and we have to ( generally speaking ) rely on the expertise of the specialists. It sounds as though you are being well looked after, and I wish you well with your upcoming procedure.

[smwdorset in reply to Tellingfibs]

Thanks so much - I was afraid of this - left hand and right hand … do you have a link to where it says about contraindications for use of NPACs being leaky valves please ?

[Tellingfibs in reply to smwdorset]

I don’t have a link to hand, but I see Katrina has pointed you in the right direction for the info 😊

[MarkS in reply to Tellingfibs]

Warfarin is excellent (probably better than the NOACs) as long as you spend more than 75% of the time in the correct INR range. The best way to do this is using a Coaguchek so you can take readings at home. I take a reading every 2 weeks which takes less than 5 mins.

[Tellingfibs in reply to MarkS]

That’s interesting Mark. I have been taking Warfarin for 5 years now and am still nervous about little ‘blips’ when it goes high or low for no apparent reason ! My INR pharmacist looked into coaguchek because she said I might find it reassuring to have, but the cost seemed prohibitive. However, it’s very easy for me to get to my INR clinic and so I go and get checked every couple of weeks, even if I have been in range. I queried the NOACs with my cardiologist because I thought it might give me more freedom with my diet !

[MarkS in reply to Tellingfibs]

If you're in the UK, a Coauchek costs about £400 to buy. The best place to get it is directly from the manufacturer, Roche. I take Vit K2 every day which helps to smooth out my total Vit K intake. I get a very steady INR, I'm in range 2-3 about 98% of the time despite a very varied diet with plenty of greens.

[Tellingfibs in reply to MarkS]

You sound to be very in control of things Mark - well done you. I would certainly consider the Coaguchek if my INR visits were not so easy. Interesting to hear about the VitK 2. Is that just a vitamin supplement or something more complex ?

[MarkS in reply to Tellingfibs]

Thanks, Tellingfibs. Vit K2 is just a supplement and widely available, e.g. Natures Best in the UK and iherb in the US as well as Amazon. I get the MK7 K2 variety and take 90 or 100 mcg per day. It will lower your INR slightly by about 0.1 or 0.2 initially but a slight increase in warfarin can allow for that. I am circumspect who I tell about the K2 as some medical staff are still in the dark ages and think Vit K should be minimised!

[Tellingfibs in reply to MarkS]

Yes Mark, I get told that it doesn’t matter how much vitamin k you take in as long as it is consistent, otherwise the warfarin has to be constantly adjusted. I love all the vitamin k rich food but if I eat too much, they have to increase my warfarin, and I have to take 9 mgs a day as it is !

[Ducky2003 in reply to Tellingfibs]

Thank you. I am lucky to be under the care of a decent cardiology dept. I will mention this to the cardiac nurse when I see her next week.😊

[smwdorset in reply to Tellingfibs]

This is interesting - I have a moderate leakage form the aortic valve and yet the EP has recommended rivaroxaban nonetheless. I am refusing it without confirmation from my valve specialist Do you know why it is that you can’t take NOACs with valve leakage?

[Tellingfibs in reply to smwdorset]

It is a mystery to me. All I have seen, when reading stuff about Afib and the usual drugs, is just the paragraph they put at the end of list of the new anticoagulants ‘but not recommended for use in patients with valve problems’. No details or reasons !

[smwdorset in reply to Tellingfibs]

Yes and I have moderate aortic valve regurgitation

[Tellingfibs in reply to smwdorset]

….and there may be so many differences between you and I, like not just the valve leakage but heart function, age, other heart structural details etc. I think when I next see my cardiologist , or even my GP, I will probe for more detail. I do remember one of my medical people saying the profession likes Warfarin because if the patient has a fall and bleeds, or has massive bruising or cuts themselves, a shot of vitamin k can sort it, whereas that’s not possible with the new anticoagulants. I don’t know more details on this either !

[Hidden]

Good Morning smwdorset, it would be best to go back to your GP and ask for their advice as they will know your full medical history and any other medications that you may be taking that could interact with the different drugs. However, you may find our info sheets on Rivaroxaban, Apixaban and Edoxaban useful, they discuss how each works, side effects, advantages and disadvantages. They can be found here: heartrhythmalliance.org/afa... Alternatively you may prefer to contact our Patient Services Team who will be able to offer support and guidance [e-mail]

[smwdorset in reply to Hidden]

Many thanks indeed for this o will read them

[smwdorset in reply to Hidden]

Thanks soMuch . The thing that worries me is that my GP adore know my full

History and yet she is simply

Acting on what the EP she contacted told her to

Do . I don’t even know if my AF is nonvalvular or not . It’s v

different from the AF

I had before and I have moderate aortic valve regurgitation which is regularly

Monitored but might be causing this very different set of symptoms ??

Where can I find info on contraindications please for use of the NOACs ? I could

Show that to my GP sand ask her to check with the EP or my

Valve specialist

Thanks

Sally

[Hidden]

If you contact our Patient Services Team [e-mail] or 01789 867502 they will be happy to discuss your situation and provide you will some more information. Hope this helps.

[smwdorset in reply to Hidden]

Thank you

[Van28]

Been on Apixaban 7 yrs with no problems. X

[frazeej]

Rivarobaxin is OD, with your evening (biggest) meal.

[LadyLawson]

I’ve been on edoxaban for two years with no side effects that I know of.

[bassets]

I'm on Apixaban with no problems