DOACs: I have had PAF for 22 years... - Atrial Fibrillati...

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DOACs

President2012 profile image
24 Replies

I have had PAF for 22 years. Very light burden for 20 years. Over past two years episodes have increased in frequency. It’s now once a week mostly. On Donedarone for 11 months to stop syncope. Works well for that but recent 24 hour holter monitor showed a few 6 second pauses in SNR. I have bradycardia. Cardiologist and EP now agreed I need a two lead pacemaker.

I have been on warfarin all this time. EP wants me to change now to a DOAC. He says they are safer and all new AF patients are put on them rather than warfarin. I am unsure what to do. The old saying “if it’s not broken don’t fix it” comes to mind.

Has anyone moved to these newer anticoagulants and are happy with that move?

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President2012 profile image
President2012
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24 Replies

Although thousands of us have moved from warfarin to a DOAC, there are many who share your view and have decided to remain with their warfarin for the reasons you refer to. I changed to Apixaban several years ago and have no regrets. You still will need to have blood tests, but these are annual/bi-annual to check the kidney function but apart from grapefruit, there are virtually no constraints on food or drink which makes thing’s much easier if you travel. At the end of the day, only you can decide whether to change or not………

President2012 profile image
President2012 in reply to

thanks. I did have one scary experience where a wrongly prescribed antibiotic brought my INR to 7.

Hi,

As a Warfarin user ( for some 13 years) I am seeing posts on here over time which suggest to me that there is an obscene level of cajoling by the so called medical professionals to coerce patients into taking these new drugs. My own GP has tried it with me but after receiving my reply her moves have swiftly been dealt a death blow. I can only conclude there is a massive 'kickback' being made to GP's, Surgeries or the management companies who own the surgery practices. Perhaps Inland Revenue should investigate !!

There are those for whom Warfarin is not suitable and there are those for whom DOAC's are not suitable. Indeed I see more and more people posting on this forum about issues they are having with DOAC's. The Australian Government Theraputic Drug Administration have already published a 'Health Advisory' on Abigitran (spelling??).

I hold the view ( and I don't care who I offend) but I would call your EP a scaremonger .... possibly a liar is closer to the truth. The fact is its horses for courses as I've just said. I use Warfarin, I have my own Coaguchek device which enables me to self test and determine my own INR, and where necessary adjust my own doses. I work in conjunction with the INR Clinic. I am also on 10 week INR tests ......... but if I feel inclined to do my own more frequent INR tests I do so, the data of the results I religiously record. I often travel to Australia and always take my device and kit with me, whether I am due for an INR test or not. I lead a perfectly normal life - I'm now 78 and still drive on a 30 hour a week basis double decker buses ( although that's possibly not normal for a 78 year old 😂). I am sensitive to food and drink and occasionally my INR chucks a wobbly but I sort it sooner or later. I have also had a number of surgical procedures from a CT Scan to Knee replacement surgery, cortisone injection into an arthritic shoulder and cataract replacements ...... and hey I'm still making a nuisance of myself. Wot's not to like about that ? Send your EP to me ............... ! I'll educate the silly person.

If you feel safe, if you feel well, if you feel protected and if your Warfarin isn't harming you ......... stay with Warfarin.

Finally, I must say when I was diagnosed with AF 13 years ago these drugs were only being trialled they had only just tumbled off the research laboratory benches. They have only started to be widely promoted in a marketing sense in the last few years. They are still too new to say they are safer than Warfarin ..... if that were seriously the case then organisations such as NICE would have ensured the drug was withdrawn from use in Britain. As I said, in this forum I read more and more of posts relating to side effects of these new and supposedly super safe DOAC's.

Cheers,

John

President2012 profile image
President2012 in reply to

thank you for your very fulsome reply. I am weighing up all the pros and cons. My warfarin clinic nurse tells me that the number on warfarin. Is decreasing every year.

in reply to President2012

.... well she would, her job is on the line ........ she is being told to do this by her management ..... bribes and Big Pharma comes to mind. Good luck.

President2012 profile image
President2012

thanks. My pauses are from sick sinus syndrome

BobD profile image
BobDVolunteer

Been on big W for 17 years and have no intention of changing.

President2012 profile image
President2012 in reply to BobD

I am beginning to think the same. Thanks

secondtry profile image
secondtry

What is powerful, often sidelined, is patient belief. Also often bullied 'for the best of intentions' is patient preference. Stick to your guns and W, derived from a natural product I understand.

President2012 profile image
President2012 in reply to secondtry

many thanks

TenorJK profile image
TenorJK

I tried Apixaban and Riveroxaban but had to go back to Warfarin as had nasty side effects. Everyone is different and DOACs would be far easier but they didn’t suit me .best wishes Jo

President2012 profile image
President2012 in reply to TenorJK

not the first time I have heard that. Thanks.

President2012 profile image
President2012 in reply to TenorJK

thanks. Best of luck

Tellingfibs profile image
Tellingfibs

I have been taking Warfarin since my Afib diagnosis in 2017. My original cardiologist prescribed it. I have since discussed the ‘new’ ACs with my more recent cardiologist, and he said simply “ It is your choice, but if you were my mother, I would want you to stay on Warfarin “. That may be partly because I have slightly leaky valves and I have read the newer ACs are not suitable if there is this problem. But my cardiologist did not refer to that.

President2012 profile image
President2012 in reply to Tellingfibs

thanks. Keep wellb

Singwell profile image
Singwell

I've had AF for just over 3 years so was never offered anything other than Apixiban. I've no issues with it. Reading the posts here from long term users of Wafarin it seems very reasonable you should dig your heels in on this issue. Your body KNOWS wafarin and it works for you. I suspect that the checks required for using this drug are considered too costly nowadays and that's the driver behind pushing patients to change. Were I in your position I might well be saying 'thanks, but no thanks'.

President2012 profile image
President2012 in reply to Singwell

thank you for your considered View. It reflects my current thinking

CDreamer profile image
CDreamer

I wouldn’t hesitate - but then I’ve never been on Warfarin.

Been on Apixaban since 2017 with no ill effects and did a lot of reading around it. I decided that it was much safer than Wafarin regarding risk of brain bleeds and better tolerated than other DOACs.

President2012 profile image
President2012 in reply to CDreamer

many thanks.

Sim22 profile image
Sim22

I'm retired Medical Microbiologst with a diagnosis of heart failure and atrial fibrillation, diagnosis back in 2018. I was offered coagulation control and chose Rivaroxaban as it suited my life style. The main difference between NOACs and warfarin is that NOACs are less influenced by diet and other medications and of course need less intervention such as INR control. Just for information warfarin is cheap and so is the testing, NOAC's are relatively expensive, I've paid sixty pounds for a months supply. The bottom line is that I would not be with out my anticoagulants.

President2012 profile image
President2012 in reply to Sim22

thanks for your reply. My TTRR is 100%

MarkS profile image
MarkS

The DOACs are only safer than warfarin if the Time in Therapeutic Range (TTR) is less than 70%. Having a TTR of less than 70% is considered to be poor control, and of course all the trials of DOACs were compared against warfarin with poor control. So I would suggest you work out your TTR (% of INR readings in the 2-3 range) and if it's more than 70%, stick with it and get yourself a Coaguchek if you haven't got one already.

Auriculaire profile image
Auriculaire

Ditto to what Mark S said. The trials only used a TTR of 65% average so some of the participants would have been even less time in TTR. What is more one of the DOACs had a trial site in China where there was a later question of malfunctioning in the machines used to read INR. Later research in the post marketing period has shown that Warfarin is not inferior to DOACs if TTR is maintained. I would have preferred Warfain but my GP won't prescribe it.

TracyAdmin profile image
TracyAdminPartner

Having AF, regrettably, can increase the risk of an AF-related stroke. The most important factor is that upon diagnosis your individual ‘CHA2DS2-VASc’ is recorded to determine whether you are high risk and that anticoagulants are required at that time.

If you score 2+ then you will automatically be prescribed them. However if you score below 2, you should be checked periodically to ensure your risk score has not changed, which could determine whether you become a high risk.

It is vital that if you are recommended anticoagulant therapy - either a DOAC or Warfarin you should remember it is helping and protecting you from experiencing an AF-related stroke.

If anyone would like further support, advice or information, please visit, the AF Association 'Medication' tab on the website heartrhythmalliance.org/afa...

Alternatively, please contact the Patient Services Team heartrhythmalliance.org/afa...

You may wish to visit the Patient Resources heartrhythmalliance.org/afa...

You can also download the following patient information sheets;

Anticoagulation and Atrial Fibrillation api.heartrhythmalliance.org...

Apixaban api.heartrhythmalliance.org...

Dabigatran api.heartrhythmalliance.org...

Edoxaban api.heartrhythmalliance.org...

Rivaroxaban api.heartrhythmalliance.org...

Warfarin api.heartrhythmalliance.org...

booklet

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