Warfarin query: I have been on warfarin for... - AF Association

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Warfarin query

I have been on warfarin for 4 years now for PAF. My doctor has suggested trying one of the newer 'blood thinners' as my INR does seem to vary. 1 week its 2.5, then 3.9 and the next week its 1.7. Taking warfarin has been like a safety blanket for me and I'm slightly reluctant to come off it but yet the appeal of not having constant blood tests is making me sway. Can anyone give me some advise on the change over please. Many thanks 😊

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Are you asking whether you should change, or how the change is made?

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I'm just trying to get a take on whether people are getting on with the new blood thinners or if they're experiencing problems. I've had a good chat with my Doctor and she told me to think it over.

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I was on warfarin for 9 years. For the last 3 of those, I self managed my dose through self testing with Coagucheck. Weekly INRs were within range 90%+ of the time. Ironically the highest value was 6.2 one week after the EP started me on Propafenone, and nobody mentioned the interaction with warfarin. That would not have been an issue with a DOAC, but was picked up because I was self testing.

After moving home the new practice ultimately refused to allow me to operate independently, citing rules imposed on them from elsewhere. Having experienced the inferior management by their warfarin clinic, I accepted Apixaban which for me has been free of any side effects.

Speaking purely for my own situation, I see this as a choice between good protection from apixaban and better protection from warfarin. I have seen no satisfactory evidence to date that outcomes with DOACs are superior to well managed warfarin. My expectation is that with time it will become clear that the reverse is true.

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I was on Warfarin for six months, then switched to aspirin until it burned out my stomach lining, then Xarelto. Easy switch. No side effects.

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Asprin is an anti platelet not an anticoagulant.

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Yes, I know; however, that is what the cardiologist gave me, early on.

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Worrying.

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CD: like maybe five years ago, many could not figure out what would be better for the Afibbers - anti-platelet or anti-coagulant. Now it's a no-brainer!

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Any of the new oral anticoagulants will probably give you better stroke protection than poorly controlled warfarin. I am lucky and in range 85% of the time or better so for me I will remain on warfarin but if "in range" falls below 75% then risks increase.

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I have 3 or 4 good INR readings then it goes to pot for 2/3 then back to normal.

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I bet you follow the dose intructions from the clinic don't you. Their computer programs do not allow for trends. If I see mine falling over time I add a small amount till it reverses and similarly going up. By the way don't worry about slight over readings. Up to 5 is not generally dangerous and some years ago the top man in INR testing told me that his advice would be to aim for 3 anyway, so a range of 2.5 to 3.5 would be OK.

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If I have to change dose, my doctor's surgery rings me. I joined patient access so I always know what my INR is after a blood test. I'm suppose to be between 2-3 and panic a bit if I go under or over. Thanks for the reassurance BobD 😊

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I’m on Apixaban which suits me & that & Edoxaban seem to be the current flavour of the month but every reacts differently & some doctors seem to have a preference.

I’ve never been on Wafarin for many reasons but mainly because I was travelling a lot 5 years ago when I first started taking anticoagulants.

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Thanks CDreamer, will definitely look into it more now.

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I have been on Warfarin for 9 and half years. I self test and have done so for about 9 years. I take my testing device ( Coaguchek XS) wherever I go, including to Australia. I watch my diet, follow the Warfarin rules ( more or less). I even adjust my own dose either directly by varying my Warfarin or by varying my food intake.

No problems.

John

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I never thought about self testing. Maybe I should go back to my doctors and ask about this. Thanks

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Kool, check the Coaguchek website, manufacturer is Roche.

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I was changed from Warfarin to Pradaxa because I was in range less than 50% of the time. No problems at all. Di

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I'm glad you've had no problems with the change Di, long may it continue.

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I was changed from Warfarin to Rivaroxaban and had very painful and very rare side effects. After 12 days I chose to self test and went black to Warfarin.

My GP was willing for me to go on any of the other anticoagulants, but I chose to go back to Warfarin.

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That's not good Thomas, sometimes it's better the devil you know

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I was on warfarin for about 4 years with an INR all over the place. Been on Rivaroxaban for a number of years now and so much better. No more trips to the clinic every 3 days for a check up. I wouldn't hesitate

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That's sounds very promising smn100. How often do you get tested now please?

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Blood test every year, its great

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Thanks, that's good to hear

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You need to be tested frequently on Warfarin as it acts on Vit K to increase clotting time, however as various foods, especially green leafy veg contain Vit K the dose required will vary with your Vit K intake.

You don’t get tested on the new drugs as they work on clotting factors in the blood to reduce their efficacy and increase clotting time & no testing is required. Having said that you should have an annual blood test for kidney & liver function.

I’ve been on Apixaban with zero side effects for nearly a year.

Hope this helps

Pat x

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Hi Pat, that sounds promising, thank you x

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I swapped to Apixaban over a year ago. Much easier. Just make sure you get kidney and liver function tests before starting and after 3 months then yearly

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I have been on Xarelto since I was first diagnosed 2.5 years ago - after my last blood tests a couple of months ago, my doctor told me I had a liver like a 'teenager' - I'm 76!

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Love your user name!!

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for me being able to eat/drink what I like and no testing was a no brainer so I opted for a NOAC/DOAC.

Rivaoxaban and dabigatran did not suit me, but Edoxaban does

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I have caffeine free tea/coffee, try not to eat many greens, only have 1 beer a week and my INR still plays up. I like your way of thinking Mike

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I've been on Rivaroxaban for 3 years now and no side effects. Give it some thought.

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Thank you, these comments have really helped.

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Ditto the above comment been on rivaroxaban for over 2 years had an ablation last year and will be on rivaroxaban for life now, no complaints and no side effects.

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I was on warfarin for about 6 years and about six months ago was changed to edoxiban and have had no side effects. Apparently the new ones are better for you if you have af. Just try it and see you can always go back to warfarin if you need to

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I am swaying towards the newer ones. No restrictions on your food yay.

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I’ve been on Rivaroxaban for four years now with no side effects. If it doesn’t suit you I would imagine you’ll be able to go back on warfarin again. Good luck.

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Yeh I'm pretty sure I could but the new ones sound really promising. Thank you.

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I have been on Rivaroxaban for three years and no side effects at all.

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That's good to hear. I am swaying towards the newer ones.

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Hi i have been on warfarin for over 15 years and the new tablets won’t be good for me since I have mechanical valves. Up to now it has been good. Fingers crossed No problem.

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That's great news, keep those fingers crossed.

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I have been on Eliquis since the 1st of Feb. this year. A month after going on it i hurt so bad in my neck, shoulders wrist and muscles in my arms. I blame Eliquis but all of my Dr.s say it couldn't be causing this and won't take me off of it. It is extremely frustrating because i have always been active, i am 79 by the way and now I hurt too much to do anything much. The only thing i can take is Tylenol. Good luck!!!

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Ohhh bless you. I've always believed nobody knows your body better than you. Please dont give up, even ask for a second opinion. Take care.

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Started Eliquis several months ago with no problems.....less chance of a brain bleed and more protection than warfarin.

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I didn't know that so thank you

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Move on to the twenty-first century. The DOACs are light years better than warfarin. Check the cost though. Warfarin is a generic and the DOACs are branded so they may be very much more expensive.

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I'm lucky that I live in the UK, so that isnt a problem. I have heard loads of good things about the DOACs so maybe 21st century here I come. Thank you.

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I don't know if you have ever met a Yorkshireman, but they say we are like a Scotsman with all the generosity taken out, and we can peel an orange in our pocket.. My beta blocker is $6 a month and when I went for Eliquis they said it was $280 co pay on United Medicare Advantage ! I did find a source "North of here" but still it's expensive.... It is a very easy drug for me to take and I have zero side effects.. I like it. When a Wisconsin mosquito take as a big chunk out of my arm, it doesn't bleed any more than usual.. I will keep taking it up to my EP appointment in July, but if he says no ablation just yet, I will switch to warfarin because I am tight... I have a ton of money so that isn't a problem, but I didn't get that way through wasting it...

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Haha I have met a few Yorkshire men through a family member. Lovely friendly people. My Dr recommended that I try a newer one but thought I'd try and suss out what people's opinions were. It has helped. Thanks

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Eliquis is better, but not hugely so. You can get genuine Eliquis from north of here at say $150 pm from an expensive source but with no insurance factor like a southern source (which can be $300pm even as a co-pay).. Long term, and for all the slight difference in convenience, I would rather put that $1,800 pa into a Hawaii vacation and do Warfarin

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I have been on Rivaroxaban for just over a year and have had no side effects that I have noticed. I have had a few minor cuts and they were no problem, stopped bleeding on its own after only a slightly longer time. Blood test annually. I only went on warfarin immediately prior to my ablation and stopped 8 weeks after. I have been put on rivaroxaban after 2 mild AF occurrences 6 years after the op. I hope you get sorted out. It seems that it is 'horses for courses'. Regards.

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I think it's the annual blood test that's bothering me. You haven't got a clue as to what's happening to your body. Maybe to ease my mind I could get a self check machine and do it every 3 months. Thanks for your reply.

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If you can self test and keep in range better with that and you have no side effects from Warfarin it might be better to stay on it. There is a possibility you may get side effects from a NOAC. Also Warfarin is an old medicine -it's inconveniences and side effects are known. There is nobody in the world who has been on a NOAC more than ten years. Who knows what long term effects they might have? I wanted to go on Warfarin with self testing but my doc refused and said NOACs were safer. Pradaxa gave me awful indigestion . I am now on Apixaban but still have mild indigestion.

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It's a minefield out there. One minute I think, no I'll stay on warfarin then I get swayed the other way. I think another chat with my Dr. Thank you.

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If they suggest Xeralto , be careful . I was on it for 8 months before they discovered it was doing serious liver damage . They called it drug induced cirrhosis. I don’t drink or smoke . Bad news !

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Oh my goodness, that's awful. I hope it isnt long term damage. Please take care.

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I was on Warfarin for 5 years until 4 years ago when I had a serious bleed which resulted in a weeks stay in hospital, two blood transfusions and an infusion of vitamin K. Then put on heparin injrctions for 2 years before being placed on Pradaxa, fingers crossed no problems now for 2 years. I never want to go back to the ticking time bomb that is Warfarin.

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That must of been awful for you to go through. I worry that after I've had my.blood test and it's 2.5, how do I know that it hasn't risen/dropped up to the day of my next test. It's very unpredictable.

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I am pretty active with mogul skiing, mountain biking and white water. Because of this my doc recommended I stay on W as you can control and know your coagulation. You don't know on the other drugs. I got a Coaguchek self tester and 12 test strips every 3 months at no charge from Kaiser in California 3 years ago. I try to get my INR in the low 2s if I do something that could result in any kind of impact. Other wise I aim for 2.5. I am a vegan and my INR drifts and jumps all over. I found self testing every 4 days keeps me at 2.5 +/- 4. I test more frequently when I am on a ski holiday and the day before any risky sport so I can adjust it for the next day. Using my self tester I found a 1/2 lb of spinach drops my INR 0.5 in a couple of hours. A lb. will drop it 1.0 over night.

I also bought a backup Coaguchek on Ebay and get most of my test strips from there as well. So you could self test on your won and go in monthly for the official test. I phone in a result to Kaiser every 6 weeks.

Cheers

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I need to correct my last response. My INR is 2.5 +/- 0.4. I rarely go out of the INR zone.

Also if you are going to switch ask if there is an antidote, how wide spread is it, will they have it where were you are traveling and how much it costs. I was told the new antidotes are $1,500 for a 1 time shot + all the ER charges.

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I'm in the UK so luckily we have our NHS, but that's a really valid point regarding the availability of the antidote. That's another question to ask my Doctor. Many thanks.

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Thanks for that info. That would be ideal for me but I'm not sure if my Dr's practice allows self testing. I will give them a ring 👍

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Everyone is different. I had bad toenail fungus a for 15 years. Crumbling, stinky, shameful. Doc said do a 3 month course of Lamisil. The internet is full of screaming warnings from bug-eyed earth-mothers with long tousled grey hair who say it will kill your liver, wreck your whole body and its a dreadful poison. I took it and it was a miracle cure with zero side effects.. My toes are beautifully healthy and its been 3 years now with no re-occurrence.. I love my toenails ! I am 71. Then my prostate Cybernife was a 100% success. Either I am just lucky or the shrill internet warnings are overdone...

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I think it's a case of one size doesn't fit all. What suits one person, wont suit 10 other people.

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