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Anti coagulation

Jacky52 profile image
45 Replies

Hi Everbody

Two years ago I had cyroablation at Barts Hospital . My A.F was very bad prior this procedure, although now I have occasional attacks of AF, missed beats. I still take Flecanide and Atenolol to control my heart. I work night shifts a few times a month and afterwards I invariably have a jumpy heart.

Prior the cyroablation I was started on Waferin and have remained on it ever since .

Today i was informed by the waferin clinic that they had spoken to Mr Sporton and he had advised that I no longer needed Waferin as I only scored a one in regards to having a stroke . According to NICE guidelines I was not a high enough risk to warrant anticoagulant medication

Can anyone tell me if this is right ? My assumption was that I would remain on this medication .

Thank you in advance to anyone who can offer me any advice.

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Jacky52 profile image
Jacky52
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45 Replies

Nice guidelines are if you score a 1 it should be considered .

My EP gave me the choice following ablation when I was in NSR, now flutter is back he said I must be on an anticoag, so I am

nice.org.uk/guidance/cg180/...

Jacky52 profile image
Jacky52 in reply to

Thank you Mike

I will look at the link

rosyG profile image
rosyG

You don't mention your age? AF can cause stroke after just a few minutes but all your risk factors and your HASBLED score should be considered- - a balance of risk I think.

Jacky52 profile image
Jacky52 in reply torosyG

Hi Rosy

I'm 55

rosyG profile image
rosyG

One of our speakers at our support group thought age made quite a difference to risk as our heart lining ages just like our skin and then it's easier for clots to form,Age starts to be considered from 65 but if one thinks of past eras people in their 40s and 50s were thought of as ageing!!

Difficult choice for you

fnurd profile image
fnurd

This is a very interesting one. It is a decision which I may have to make next week (3 month visit post ablation). I have been carrying out some research on the subject. There are many studies, but none of them very good or conclusive.

What does seem clear is that low risk patients (CHADSVASc=0) should stop the anticoagulants (warfarin in your case) 3 months after a SUCCESSFUL ablation, and high risk patients (CHADSVASc>1) should probably continue the anticoagulant. For CHADSVASc=1 (you and me) it is a bit of a grey area.

The direction I am probably heading (to be confirmed) is that for CHADSVASc=1 patients after a successful ablation the stroke risk seems to be low, and about the same as if they did not have AF. The anticoagulant is then likely to do more harm than good by increasing the number of major bleeds andbrain haemorrhages, so should be discontinued.

One thing that does concern me for you is that one of the studies I looked at (by Themistoclakis) favours stopping antithrombotics (OAT) after successful, but also says: "our patients restarted OAT systematically and promptly after any arrhythmic recurrences"

sciencedirect.com/science/a...

Incidentally NICE guidelines are based on cost to the NHS, not what is best for the patient.

Once I have had the discussion with my EP I am planning to post with a summary of my research, his comments, and my personal decision.

I hope this helps, for now.

Fnurd

rosyG profile image
rosyG in reply tofnurd

Hi- don't think that is fair to NICE- not saying they get everything right but they look at a wide range of evidence- also they insisted on NOACS when the cost was a point of great argument by others,

The problem for you and Jacky is that you don't know when the recurrence may come- and also some AF is asymptomatic. As she has felt a few stirrings I think she has to consider everything very carefully

fnurd profile image
fnurd in reply torosyG

I don't think it is unfair to describe what NICE do. There is no right or wrong implied. NICE hava a remit to ration the limited NHS budget, which means some excellent, but expensive, drugs (and surgeries) are not available on the NHS. With finite NHS funding it is always going to be that way.

I don't believe that NICE insist on NOACs. Their website says "Anticoagulation may be with apixaban, dabigatran etexilate, rivaroxaban or a vitamin K antagonist".

The suggestion by Themistoclakis et al was that when the recurrence does come then the anticoagulant would be restarted. Another very interesting point made in the paper was: "the thromboembolic risk increases only in patients in whom the duration of device-detected AF is 24 h or more." This would seem to imply that occasional brief episodes of AF are not that important. I have not investigated that further however.

rosyG profile image
rosyG in reply tofnurd

no NICE don't insist on NOACS but they do, if you look at the whole guidance, insist patient preferences should be considered- we had a lot of opposition to allowing patients to have NOACS because they were thought to be expensive and nice guidance helped to secure the choice.Thankfuly this is past now and people can choose in most areas of the country.

As you say, the trials you quote need to be randomised before solid evidence is available.

Some cardiologists have told us that they have seen strokes in patients after only 6 minutes of AF- and also sometimes people are asymptomatic- if this wasn't the case we could all have PIP ant-coagulation- and save some bleeds and a lot of NHS cash- this isn't the case !!

fnurd profile image
fnurd in reply torosyG

I did point out that none of the studies were on their own conclusive. However if looked at appropriately provide quite a lot of pretty good evidence. This is why the studies were carried out after all. My own preference is always to make decisions based on as much research and data as is possible. My intent is to try and help those who would like to do the same.

The Themistoclakis study was not suggesting PIP, it pointed out that anticoagulant would be restarted on an ongoing basis after an episode.

rosyG profile image
rosyG in reply tofnurd

One hopes a stroke hadn’t occurred on the meantime

fnurd profile image
fnurd in reply torosyG

The study showed that the rate of such strokes was extremely low.

They also point out "The It is important to consider that OAT involves a 1.2% per year risk of major hemorrhage". This is the trade-off.

(They use OAT to mean Anticoagulant Therapy)

BobD profile image
BobDVolunteer in reply tofnurd

There is actually little evidence to suggest that successful ablation removes stoke risk. In fact the act of ablating changes the surface of the atrium which can promote pooling and thus clot formation. Life is about risk management but you can't do this without all the facts.

I know that I fondly expected to be off warfarin after my ablations but was persuaded otherwise once I understood things a little better.

fnurd profile image
fnurd in reply toBobD

Bob.

I can send you a list of the references (with links) if you would like to see the evidence. What I presented above is just an initial summary. I did point out that the evidence was not conclusive, but I find it non-the-less quite compelling. I have also stated looking at the data in a slightly different way which I was planning to share later.

But for a start this is one such study: sciencedirect.com/science/a...

"In this nonrandomized study, the risk–benefit ratio favored the suspension of OAT after successful AF ablation even in patients at moderate-high risk of TE. This conclusion needs to be confirmed by future large randomized trials."

By chance the discussion section also looks at the statement that "extensive LA lesions might impair LA function", and suggests the opposite to be true.

BobD profile image
BobDVolunteer in reply tofnurd

We are all welcome to trust our own experts and as I always say the only thing that is right is what is right for you.

KMRobbo profile image
KMRobbo in reply tofnurd

Dear Fnurd

I have just had an ablation. I would be interested in your evidence links for a consideration for myself to get off AC's. I found the article you provided very interesting

Regards

fnurd profile image
fnurd in reply toKMRobbo

Hi,

I am still looking into this, there is a great deal of published clinical trials in this area and it is not just a matter of looking at the conclusions of the authors. I am looking into the summary tables in the publications, and extracting the relevant data. My personal deadline for this is my 3 month EP visit March 7 after which I will need to have finished investigating.

I guess from your post that you are earlier in the process, so won't have to decide yet. I hope to share my own conclusions (and the references) later on next week.

KMRobbo profile image
KMRobbo in reply tofnurd

You are correct I am seeing my consultant in 2 months time for a follow-up and I am expecting a discussion/decision then. Following my first ablation for AFib on the 29th Jan it was odds on all drugs would be removed after 2 months but am now afraid the fact that Atrial flutter has occurred that this may change. Hence why I am so interested.

I am 57 and a half and had chads2svasc score of zero and was asymptomatic in A fib , I had the first ablation to come off the felainude/ ditiazem as I was not then on AC's until 25 days prior to the ablation. Unfortunately I may have gone backwards to plan!

Thanks for you reply.

fnurd profile image
fnurd in reply toKMRobbo

I don't think that any arrhythmias early in the 3 month blanking period after will influence whether you come off anticoagulants.

KMRobbo profile image
KMRobbo in reply tofnurd

The flutter i have had was in the right atria not the left that was originally ablated. It appears to be an independent development that has occurred on the 7th February, 9 days after the original ablation. There was no flutter present prior to , during or immediately after the original ablation.The cardiologist/EP advised he would have sorted it out during the original ablation had it been apparent. I am pretty sure he is correct in this as I was asymptomatic in AFIb even when my HR was up over 220 beats per min - I could still run for example. However the flutter was completely different:- major discomfort and breathless at any physical activity - even getting off the chair and going upstairs.

Hopefully the second ablation has sorted that out, but I am wondering if there is some other underlying cause for both arrhythmias.

Luisa1987 profile image
Luisa1987 in reply toKMRobbo

i was having regular afib attacks and last year attended A and E at least 8 times, in the end they expedited my ablation as i had been on the list for over 12 months. I had the ablation in September last year and my follow up appointment has been cancelled twice! i now go back in April but it hasn't worked and i have episodes at least once every 2 weeks, however to get to the point when i had it done the specialist told me i would probably be back for another as my atrium was very enlarged due to the attacks i had been having which he suspected had been caused by leaky heart valves! He wrote to my doctor his findings and told me to get an appointment with my GP and he would decide what the next move would be. I went to the GP and he said he couldn't understand a word of what the EP had written!! i said i would tell my EP what he said and maybe he will write again? i feel i have been left in limbo! a month ago i was sent for a heart scan, who asked for it God knows because i don't!!! cut backs!!! In December last year i had a mini stroke to top it all! i am trying my best to keep working but it is very difficult as i cant sleep properly due to having to sit up as lying flat or on my side triggers the AF. I am on Apixaban flecanide, candestarten verapamil steroids and ranitadine!!!!

KMRobbo profile image
KMRobbo in reply toLuisa1987

Luisa

I am so sorry for your situation. You have things beyond my experience, as so far I do not have enlarged atrium.

When you go back in April is it for another ablation? is this organized by the GP or the EP?

Have you had results from your heart scan?

Luisa1987 profile image
Luisa1987 in reply toKMRobbo

no results yet and my April appointment is the 3 month check up after the ablation only its 7 months later!

KMRobbo profile image
KMRobbo in reply toLuisa1987

To me that does not appear to be acceptable.

I think what you need to do is write everything down that has happened and not happened in a letter to your GP and explain your deteriorating situation and then get an appointment to engage him or her to help to get some help with the problem in a shorter timescale.

I believe your GP is responsible for your treatment. What you need to insist on is a plan from him/her to help you medically.

I also think it is the GPs responsibility to understand what your EP is advising/ suggesting. If the Gp cannot understand the EP what chance have you?

Your rights under the NHS are described here:

citizensadvice.org.uk/healt...

Best wishes

Luisa1987 profile image
Luisa1987 in reply toKMRobbo

Thanks for that i will make an appointment with my GP and and i will let you know what he says.

Kevin51 profile image
Kevin51 in reply tofnurd

My own experience FWIW. My CHADS score = 1 (from age >= 65). Prescribed NOAC post ablation for the first time. I followed the Mayo clinic post-ablation advice for my CHADs score and kept it up for 3 months post ablation. Have now stopped NOAC - happily since my stroke risk is lowish and my risk of internal bleeds carries more weight for me. My EP did not object but said to revisit when I was 75 when the balance of risks would have changed. It's not an easy one. Look forward to reading your conclusions.

Jacky52 profile image
Jacky52 in reply toBobD

Thank you Bob for your input.

Jacky52 profile image
Jacky52 in reply tofnurd

Thank you very much for this help.

Hi Jacky, what a difficult question. As you know, we are not medically qualified, therefore we are unable to make any specific comments about what a specialist has recommended for you because he will be aware of your medical history and will have based his recommendations accordingly.

However, generally this is a very grey area and very often Cardiologists/EP's err on the side of protecting against the risk of stroke, particularly if there is no history or obvious risk of internal bleeding.

If you think you would prefer to remain on anticoagulants, I would make contact with your specialists secretary explaining what you have been told by your INR clinic. Mention that you are concerned about the risk of stroke and therefore you would prefer to remain on anticoagulation. Ask if she could have his decision confirmed to you and your GP in writing.....

Jacky52 profile image
Jacky52 in reply to

Thank you very much Flapjack. I will contact them tommorow and I will ask for the letter. Much appreciated.

I think much depends on what you personally are comfortable with. If you feel ill at ease dropping the warfarin, I think it would be unhelpful to insist that you stop taking it. It's not expensive and there are many under 65s who feel anticoagulation gives them peace of mind.

I'd be the other way round as I find anticoagulation somewhat uncomfortable. I didn't like, when it was first suggested when I was 67, the fact that it took me away from being a normal person. As I'm now 71 I think it is in my best interests to take it and I am more relaxed than I used to be, but I am still slightly convinced that it might turn out not to have been my best move. It is not a rational view and I know this! I eventually agreed to take warfarin because I felt to die from an out of the blue bleed would be better than having a serious stroke.

Sam72- profile image
Sam72-

Hi jacky , I am 45 and 6 months post ablation and they might be giving me the choice to stop the meds on my next appointment in June . It’s a very tuff decision and very scary but I would prefer to be off them to be honest.

It’s just so hard to choose 😞 they said I am a 0 on the chad score but being a woman is a 1 . So I don’t no if it’s age or what why they said I am a 0 🤷🏼‍♀️

MarkS profile image
MarkS in reply toSam72-

If your only risk factor is being a woman then your score is zero, Sam. See my previous reply to you with more details.

Sam72- profile image
Sam72- in reply toMarkS

Thanks mark will look now 👍🏼

Lizzo profile image
Lizzo

Hi Jacky. I can only speak from my own experience. I had a successful ablation about 3 years ago and was taken off warfarin. However, 2 years after that, I suffered from an AF-related TIA. Luckily, the effects of that were not too bad, but I have now been put on Pradaxa (a NOAC), probably for life. I have also been put on statins. I know that I was lucky that it was relatively minor, but the effects of a full-blown stroke can be devastating, and it is not worth the risk in my opinion. I am now 59, by the way. All the best, Liz xx

Jacky52 profile image
Jacky52 in reply toLizzo

Thank you Liz. I really appreciate your reply .. Would it be too much to ask the symptoms you experienced with your unfortunate TIA... Thank you, Jacky xx

Lizzo profile image
Lizzo in reply toJacky52

You're welcome, Jacky. I had problems speaking - I knew what I wanted to say, but my speech was garbled and I was stammering badly. My husband immediately recognised this as a potential stroke and rang for an ambulance. He said that the left hand side of my face had dropped slightly as well, but I was able to move my arms for the paramedics when they arrived, and I could also speak OK by then too. I thought at the time that he was over-reacting, but it was diagnosed as a TIA at hospital, so he was right! I hope that you continue onto a full recovery, Jacky xx

Jacky52 profile image
Jacky52 in reply toLizzo

Thank you so much Liz x

boudiful profile image
boudiful

I’m 40, was told my score was zero and suggested to be of xarelto 3 months post Flutter ablation. I agreed with this, however as a precaution, I do take daily doses of turmeric, which has been shown to be equal to a low grade pharmaceutical anti-coagulant (plus all the other good anti inflammatory stuff it does for you). You cannot take turmeric if you are on an anti-coagulant as it is contraindicated for excessive bleeding. So this might be a good way forward for you Jacky, especially when you sit in a grey area? Does/has anyone else considered turmeric as an option for maintaining a pharmaceutical drug free solution while still doing something towards protecting your chance of stroke?

Good luck with the decision. K...

fnurd profile image
fnurd in reply toboudiful

I have had a very quick look and can't find any evidence that turmeric has any effect in reducing stroke risk in AF patients. There seems to be some research in vitro (in the laboratory) or in small animals, but nothing in Humans with AF. I could have missed it though, so if anybody can supply good evidence that would be helpful. If it were me I would never rely on turmeric instead of a proven medication, unless there was as good evidence available.

However i might use the turmeric as an excuse for a visit to the Indian restaurant !

boudiful profile image
boudiful in reply tofnurd

:-) Thanks for the quick response fnurd. I only discovered tumeric from a clotting perspective because after my ablation I had excessive bleeding and the doctors couldn't figure out why. Then they discovered I had started taking tumeric again as a matter of course the day after the surgery (which I did prior to the ablation). Stopping that, stopped the bleeding issue. I had started taking it initially to help with blood pressure - which it did wonders for.

I have also found references online to similar animal studies regarding anti-clotting, one published in the "Journal of Medicinal Food" in January 2012, and one that suggests a benefit to tumeric after a stroke too - "Microcirculation" in August 2013. Finally, there is this study that showed curcumin helps in lowering blood clots related to stents (ncbi.nlm.nih.gov/pubmed/173... - but again not AF related.

I just figured clotting is clotting - I don't think the pharma drugs are AF particular are they? I guess there aren't many human trials because since tumeric is readily available (like garlic and ginger etc.), there is little money to be made in studying it.

All that being said, PennState Hershey Medical Center says this: (pennstatehershey.adam.com/c...

"Turmeric (Curcuma longa). Early studies suggest that turmeric may prevent heart attack or stroke. Animal studies have shown that an extract of turmeric lowered cholesterol levels and inhibited the oxidation of LDL (bad) cholesterol. This is helpful because oxidized LDL deposits in the walls of blood vessels and contributes to the formation of atherosclerotic plaque and other damage to the vessels. Turmeric may also prevent platelet build up along the walls of an injured blood vessel. Platelets collecting at the site of a damaged blood vessel cause blood clots to form and contribute to blocking the artery as well. Turmeric may also thin your blood and, therefore, should only be used under the supervision of a provider, particularly if you are taking blood-thinning medications, such as warfarin (Coumadin), aspirin, and others. More research is needed to determine whether these effects apply to people."

Finally, according to the University of Maryland (and other contrindication sites)(umm.edu/health/medical/altm...

"Turmeric may strengthen the effects of these drugs, raising the risk of bleeding. Blood thinners include warfarin (Coumadin), clopidogrel (Plavix), and aspirin, among others."

Seems there is definitely evidence out there that it has anticoagulant properties and strengthens other anti-coagulants (in warfarins case, by up to 1.5 times). And apparently when used externally, also coagulant properties. Shame there hasn't been more research. Since I'm not on any other pharma anti-coagulant and my doctors don't feel I need to be (but my EP was happy for me to keep taking Tumeric), its not going to hurt at this point, but it would be good to know of any human trials if anyone does.

In the meantime, make that a seat for two fnurd! Cheers, K...

fnurd profile image
fnurd in reply toboudiful

It seems clear does that Curcuma at some dose has at least some effect on clotting. However this is a long way from proving efficacy and safety in preventing strokes in humans with AF. It is the sort of minimum data which is available prior to the first, tentative, early clinical trials in humans (phase 1). Having worked in this area for 30 years it is incredible how few drugs are deemed efficacious and safe enough to be approved for use by ordinary people. Less than 1 in 10 of drugs in phase 1 trials make it onto the market (about 12% excluding cancer drugs). It would seem that turmeric is at around that phase 1 stage now.

I don't really see the attraction for replacing a safe and efficacious drug with an untested one, especially as this won't be available on the NHS. If the drug is effective it will be likely to increase bleeding risks, eg brain haemorrhage.

Jacky52 profile image
Jacky52 in reply tofnurd

Thank you very much x

MarkS profile image
MarkS in reply tofnurd

I started on Opti-turmeric from Healthspan a couple of weeks ago. This is a bioavailable form of curcumin. My INR was 2.6 and it's now 2.5 (just taken it this evening in response to your prompt!). So I don't think it affects INR though it could still have an anti-platelet effect.

Jacky52 profile image
Jacky52 in reply toboudiful

Thank you very much I will most definately consider this option x

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