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AF Association
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Warfarin

Hi,

I would love to hear from anyone who was reluctant to start Warfarin but later decided to go with it. What changed your mind? Has anyone had any bad experiences of bleeding whilst taking warfarin?

Also has anyone decided NOT to take Warfarin or any anticoagulation?

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I take warfarin and have found it less bad than I expected. This doesn't mean I like it - quite the reverse - but I have been stroke free for the last 16 months and that's the important thing. I feel OK. I don't think my hair is thinner and I have not had trouble with bleeding - even when I had an ablation and my femoral vein leaked enthusiastically in the night it wasn't a problem for more than a moment or two. My INR was 3.5 at the time which is moderately high. I have had a few weird hot bruises on my fingers - Achenbach syndrome - but they don't cause trouble and don't last long. It bothers me that they might occur elsewhere, like my brain.

I refused to take Warfarin at first because I was (and still am) very frightened of a haemorrhage, accident, cut, fracture or mega bruise. I was appalled at the dietary implications, at having to carry a little yellow card, at departing from normality, the need to check every remedy to see if it was compatible and all that . It was all acknowledging the fact that I was at risk from stroke because of my heart's annoying peculiarities. Having the words 'For life' written in my yellow book was very upsetting.

I gave in because my AF became more frequent and because my children leaned on me. Everyone leaned on me - the cardiologist, everyone at the surgery - I had discussions with three of the GPs who were very helpful but insistent - plus friends and the extended family. The exception was my noble and supportive husband who has at all times understood and tolerated my fury, incandescence, rages and, at times, total misery.

When I started taking Warfarin I felt completely at odds with the world, convinced I was taking a step I would regret and fearing that it would kill me. At the time my husband was just starting a shortish course of aggressive and unpleasant drugs prior to radiotherapy and this helped to make warfarin seem relatively benign. (He's just had a good PSI test and has no appointments for 6 months)

I really didn't feel I needed anticoagulation as my circulation has seemed good enough when I have AF and I might have been right but I'm probably wrong. The longer I've belonged to this forum, the more I think I am deluding myself to think I would be fine without an anticoagulant. I would rather die than have a major stroke, so warfarin had to be the way forward. I find the NOACS much too scary.

I still don't get on with Warfarin. I need a lot of it to creep up to a pathetic INR. I frequently drop down out of range and am far from stable. I go for an INR test and come away not pleased with a) the result or b) the dose I've been told to take or c) the gap before the next test. Last time I didn't like all three.

My partners in Hearts (appropriately!) are Warfarin, Hemlock and Arsenic, and I love giving Warfarin the Queen of Spades. Gives me a real buzz.

I have contacted my EP to discuss Left Atrial Appendage Occlusion in the hope that I might gain protection from stroke without increasing my risk of bleeding.

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Hi Rellim, good to meet you at the recent Patients' Day. Have read your posts about Warfarin with interest, but especially this one. Having a supportive husband must be so helpful.

I just looked up Achenbach syndrome, interested by something about your description which rang bells for me and lo and behold, something I have had for years, since I was in my late 40s even, and never diagnosed by any GP, now has a name, so thanks for enlightening me as to why I often, out of the blue, have had what felt like a bee sting and then a swollen bruised finger.

I love this site, amazing what information you can glean from it.

Stay well.

Kate

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Hi Kate. Yes it was good to meet up at Patients Day. Glad this ramble had an item of interest! My GP knew of the type of bruise but not the name. Aren't they odd? Pain is the first indication. I felt the last one happen when I was putting a letter through a letter box. As you say, like a bee sting. I didn't have any before I started taking warfarin but perhaps it's coincidence.

Yes, my husband is a treasure, and I do appreciate all his support. Have to be organised and focused when he is away and I'm on my own hoping nothing horrid will occur. He tends to wave a magic wand and sorts things out.

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Very well described. But I am sure there is a natural altenative..!! It,s just going to take some strong investigations by people cleverer than I.

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Like lots of things the thought is often worse than the action. I was convinced of the wisdom by the simple sentence " you can always stop taking warfarin but you can never undo a stroke." All that said, you should have the right to make your own choice based on best intelligence including both CHADSVASC and HASBLED scores to judge both your stroke and bleed risks. This is something that your doctors should have discussed already.

Good luck with whatever you decide but do make sure that you do fully understand everything.

Bob

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I was very reluctant to start taking warfarin - even argued with the cardiologist about it until he pointed out that I was 5 times more likely to have a stroke than people of my age without AF and that an AF stroke is usually severe.

Now it is my comfort blanket and the knowledge that I am protecting myself as much as I can far out weighs the minor inconveniences of the medication. I consider myself lucky that there is such a drug.

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I am only 50 and my only risk factor is being a woman so I don't normally take Warfarin. I have been taking it for a couple of months prior to an ablation and expect to stop some time after the ablation. I haven't noticed any issues, despite worrying about bleeds, although as very keen to have ablation have not messed with diet at all to keep in range. I want to be able to vary my diet; to lose weight, manage BP and AF better and go out walking in remote places again so I will be glad to be off Warfarin. I think it can be unhelpful that some peoples insistence on everyone taking anti-coagulation (despite clinical guidelines based on statistical evidence) regardless of balanced risk factors can risk making anyone raising an alternative view being branded a heretic. There is a lot of information out there to make your own judgement, in conjunction with your medical team.

Jo

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I have been on warfarin for over four years now, after an episode of atrial fibrillation. The warfarin (or anti coagulation) reduces dramatically the chance of stroke (or brain attack). I have looked hard at the other anticoagulants that don't need monitoring. They seem fine if you are having difficulty controlling your warfarin dose. However, I use home testing (Roche CoaguChek) for my INR (to monitor warfarin dosage). This allows easy titration of warfarin dose and doesn't involve visits to the anticoagulant clinic.

Bear in mind, too, that warfarin is a well established drug which can be easily, rapidly and safely reversed.

I am just going to check my INR now!

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Hi. I was diagnosed with af a year ago and was immediately put on warfarin. Although I thought it was a great faff at the time, especially when trying to get the right dose I am pleased that I stuck with it. Had stable inr for ages but have just started taking amiodarone and this has sent it haywire. On reflection I would rather this than a stroke. Have considered asking for the new NOACS, but at the moment I will happily stick with warfarin. When the NOACS have been around a bit longer I may ask to go on them.

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I would be far more concerned about Amiodarone and the horrendous side effects than Warfarin any day

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Whether we choose warfarin or one of the new anti-coagulants, most of us are a whole lot safer than living without them. HappyJo thinks it is unhelpful when some people insist on everyone taking anti-coagulation "despite clinical guidelines based on statistical evidence" and "regardless of balanced risk factors." I'm sorry Jo but the statistical evidence is clear. Even the youngest among us with the lowest CHADS score, are at least 5x more likely to have a stroke than someone of a similar profile but without AF. The rest of us are somewhere further up that scale. "Balanced risk" is not straightforward when weighing up stroke versus bleed. While taking anticoagulants (and in therapeutic range with warfarin) we are 9x more likely to have a stroke (clot) than a bleed. So one cannot say that the decision is a simple 'balance' between the two. Bear in mind also that most people survive a bleed.

Of course these statistics are based on 'average joes' and if you and your doctor have determined that you are especially prone to bleeds or other contraindications exist, then a different course of action must be considered. But "You don't need them yet" is not a sound medical reason, it's a fob off that could kill you!

For most of us, the way ahead is clearly signposted. However, we all have a right to map our own destiny of course and if you choose to take a different path then...... good luck.

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I refused Wafarin for various reasons, some rational and others intuitive. I had a very strong visceral response against the very name and I always listen to my body as it has never let me down. I am not talking about anxiety or worries.

The rational reasons were it required monitoring which would require attendance at clinics and I was still working then I as I was self-employed with absolutely no flexibility in timings it would have impossible. My husband worked in USA and we travelled there often as well as traveling all around the world quite frequently. Although INR testing in Europe is pretty easy, US more difficult and developing countries - well would you?

For these reasons my GP was very happy to prescribe Dabigatron and it suited me very well.

I am currently 'taking a holiday' from Anticoagulation, now We don't travel nearly as much and probably won't be going much beyond Europe from now on, when I have to reconsider in 2 years time I probably would still favor NOACs but who knows as there may be a lot of new information available by then.

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I was put on Warfarin about 12 years ago following a 3 - day monitor which must have shown up some ' funnies ' which I was unaware of. I just went with it , told to avoid any more rock climbing & contact sports & that was it. I have always bruised easily & just found the tendency enhanced slightly - particularly on my fingers if I have had to apply undue pressure to open stubborn jars etc.

Otherwise , no probs. I use a CoaguChek monitor now - a godsend. I always kept a close watch on my INr results anyhow& if I thought that the dose needed ' tweaking ' & the clinic had not done so I would phone them & discuss. You have to be pro active in this game.

Sandra

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Very interested to read this thread. Warfarin was suggested at my last appointment at Papworth hospital, I have DCM, failing valves, in CHF, I dont have AF but a huge problem with ectopic beats PVC's, which drs are concerned will develop in AF at some point. I have to say I am reluctant to take, any thought on the alternative drug.

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I have always had a CHADS score of zero and still have, but my EP put me firstly aspirin, then a few years ago he changed me to Warfarin. I assume his view is that if you have (or have had) AF to the extent I have, then you need to be anti-coatgulated regardless of your score. I'm putting words in his mouth, but will be seeing him next week so going to ask why I'm on AG's in spite of a zero score.

On Warfarin, I've had a few minor problems with cuts not healing quick enough but just a nuisance really. When I was first put on Aspirin, even though a very low dose, I had blood in my pee until I go used to it. That really worried me, but have had nothing like that on Warfarin. I've had no side-effects I'm aware of. Can't comment on hair loss because I'm bald anyhow :-(

Koll

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Been on Warafrin since 1992 and have had a few up and downs blood tests a bit of a pain but still here. Been told I am on it for the rest of my life! Not taking anything is far worse in my humble opinion!

Be Well

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My husband has been on warfarin for about 4 1/2 years and I have been on it for almost 3 years. Other than occasional too high or low INRs no problems. We chose it since new meds have no way of being reversed if bleeding occurs and personally I like a med to be out for several years before trying it.

I'm having a colonoscopy next week and will be off warfarin for 5 days but bridging it with shots of Lovonox.

If on one of new meds would only be off a day.

Heather R

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Hi cmjoyce,

I put off taking Warfarin for ten years, but then had an AF episode lasting ten days so thought I better give it a go. I was pleasantly surprised to find that I did not have to change my diet, just avoid a couple of juices which I don't drink anyway. I got up to INR of 2.1 in four weeks and was given a week off blood tests, so all seems to be going well at present. What the future holds remains to be seen.

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We are all part of this drug dependant world.. Very sad to say. After many investigations into a better solution. So far I am stumped. But I,m sure there is a better way.... But the drug companies are one up on us all

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I was initially reluctant to take Warfarin. My Cardiologist arranged for me to meet with the head of the Anticoagulation service. He explained the massive reduction in stroke risk and the need to be on Warfarin if I was considering an ablation. This convinced me and I have now taken it for 2 years and completely accept this will continue. I have experienced no side effects and the changes to my INR are mainly when other drugs are altered.

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