NEW ANTI-COAGS/GOOD OR BAD?

[sarniacherie]

I would like some feedback from anyone taking one of the new anti-coagulants, please. The cardiac consultant took me off 1 aspirin daily and sent me back to my GP to discuss alternatives. I have several friends on warfarin, none of them totally happy with it, so I would prefer to try one of the new tablets. My GP impressed upon me the importance of not getting cut or having an accident as the bleeding might be difficult to stop! Fills you with confidence, doesn't it? At the moment I feel like I am playing russian roulette with my health as I have no protection regards a stroke. Comments, please.

[Hidden]

Good news about aspirin was t much use if AF and prevention of stroke.Try reading about options most of new ones have antidotes now. You may get all g OK warfarin

[sarniacherie in reply to Hidden]

Thanks for your reply. It is a minefield, isn't it? I have just collected a prescription for rivaroxaban, so fingers crossed. Best wishes.

[jennydog]

I take Pradaxa (dabigatran) There is now an antidote to it called Praxbind. If you need to take an antacid then a different NOAC may suit you better.

I am free of routine monitoring, traipsing to the surgery etc. And no dietary restrictions.

[sarniacherie in reply to jennydog]

Thanks for your reply. That is one attraction to these new drugs. There doesn't seem to be the regular blood tests and dietary restrictions. I will be starting on rivaroxaban tomorrow morning, so fingers crossed. Best wishes.

[BobD Volunteer]

Seriously you had no stroke protection with aspirin and that can cause harm to you in the form of stomach irritation and bleeding. Good to be off it.  Forget bleeding on anticoags. It is highly overrated and I feel your GP is scaremongering.  I have been on warfarin for years and years and work with metal  and sharp objects. OK sometimes I might bleed for a minute or three and on one occasion woke up with a nose bleed but anticoags neither make you spontaneously bleed nor as is so often thought, thin your blood. They just make it take longer to clot.

[sarniacherie in reply to BobD]

Thank you for your reply. I have read that these new drugs are pricey, so that might have been in the back of his mind. Your post is very comforting, thank you. Have a lovely Easter.

[absolutepatsy in reply to BobD]

BobD, I have PAF and I was advised that I was 1 on the Chads Score for being female and told about the risk of bleeds v stroke. I was on Riveroxiban at the time and after scaring myself at the thought of a bleed in the brain I came off the Riveroxiban as I thought it must be unsafe to stay on it during periods of NSR, I am now petrified of stroke and looking for some words of wisdom and reassurance. 

[PeterWh in reply to absolutepatsy]

My view is get back on it!

[BobD Volunteer in reply to absolutepatsy]

Peter is right in my view. Unless you have other conditions which make bleeding a risk (check out your HASBLED score)  I would stay on what your  (very well trained ) doctor has given you. The stroke risk for people with AF is NOT dependent on the number or duration of any events. It exists full stop. In fact many EPs feel that even successful ablation does not remover the stroke risk as changes to the internal structure of the atrium caused by AF can make blood pooling and clot formation more likely.

Again a purely personal opinion but I think that people who think that they can take anticoagulants as pill in the pocket  when they have events are playing Russian Roulette.  Many sufferers can be quite unaware of AF events being asymptomatic so do not actually know when they happen especially if during sleep.

[PeterWh in reply to BobD]

One of the other posts on here was about pacemaker that picked up AF whilst person was asleep and they were completely unaware of this.

I have mentioned a few times on the forum that even people who have symptomatic AF episodes can ALSO. have asymptomatic episodes in the day or night. On one occassion a cardiologist (?EP as well?) endorsed this. There is also a thought that overall there are more episodes at night then in the day (12 hour periods). 

[paulh1 in reply to BobD]

Bob, is right about being unaware of when you  go into afib. Couldn't imagine why I was waking up in the morning feeling like I had no sleep at all and tired. Then I had my ablation. I wake up in the morning now feeling really good. Evidently, I was having episodes while asleep  and didn't even know it.

[absolutepatsy in reply to BobD]

Thanks BobD. I see Cardiologist soon and am going to go back on Riveroxiban, I also have to discuss being on Sotalol as you mentioned this drug is not recommended as it can cause Arrhythmia and I want a referral to an EP although don't know if there is one in Scotland.

[PeterWh in reply to absolutepatsy]

There are quite a few in Scotland according to others who post on here.  See main AFA website for a list.

[absolutepatsy in reply to PeterWh]

Thanks for the pointer to AFA website, there are a few in Scotland as you say. 

[sarniacherie in reply to absolutepatsy]

My cadiologist took me off aspirin after telling me it was no protection against a stroke. Some of my friends on warfarin are not happy with it so I was left with the prospect of one of the newer anti-coagulants. My GP painted a gloomy picture of there being no antidote and excessive bleeding but weighing up the pros and cons there are more postives for taking this drug than negatives, although reading the information sheet which comes with the tablets makes you wonder! I think my GP may have been negative due to the cost. I started rivaroxaban yesterday, so it's early days yet. The posts and replies on here give a better picture of this drug being good and will reduce the risk of a stroke more efficiently than other ways. Good luck.

[Rellim296]

I've just written about my fears and difficulties with warfarin - some people get on fine with it.

I now take rivaroxaban - no problems.  I find bleeding isn't difficult to stop.  It might take a bit longer.  I think the dangers from anticoagulation may only come into play if you have a situation that is just short of life threatening. 

[sarniacherie in reply to Rellim296]

Thanks for your reply. I will be starting on rivaroxaban tomorrow, so fingers crossed. Your comments were very calming! Best wishes.

[Rellim296 in reply to sarniacherie]

That's good!  You just have to remember to take it - with food - at the same time each day and you have instant anticoagulation.  So simple and no food issues, no wandering out of range.

[sarniacherie in reply to Rellim296]

The pharmacist was very helpful and suggested breakfast was a good time of day to take my tablet. Early days, but so far, so good.

[Rellim296 in reply to sarniacherie]

Excellent!

[Kateydog in reply to Rellim296]

I've been on Rivaroxaban for a year now with no problems.  Bear in mind that the half-life is something like 12 hrs, so if you take your pill at the end of the day the worst time to have a bleed will be during the night while you are resting and unlikely to damage yourself.  I love the freedom compared with Warfarin and all that testing and dietary inconvenience.

[sarniacherie in reply to Kateydog]

Thanks for your reply. I started rivaroxaban yesterday and the pharmacist suggested taking it with breakfast. Early days but these positive replies have helped. Enjoy Easter.

[denny-62]

I am on rivaroxaban and it's great. No bruising and if you cut yourself it just bleeds a while longer. No antidote yet but beats taking warfarin.

[sarniacherie in reply to denny-62]

Thank you for your reply. I am starting rivaroxaban in the morning. These replies have helped to calm my worries. Best wishes.

[Dodie117]

I was on warfarin for almost 3 years and no real problems.  I switched to apixaban recently as fed up of watching diet etc. I am fine so far. As Bob says, the bleed risk is overstated as normal everyday cuts do not cause any problem. An antidote is being tested for apixaban I believe. I would say go for something immediately, you can always change later if you are not happy with it. 

[sarniacherie in reply to Dodie117]

Thank you for your reply. I have picked up my first packets of rivaroxaban to start tomorrow, so fingers crossed. Good advice, thanks. Enjoy Easter.

[rjr681]

I was on Pradaxa for several years and have been on  Apixaban now for over a year. I have had no real problem with either. That includes a few cuts and bruises. it may have taken a little longer and a bit more pressure but nothing like what my imagination thought it would be. (expected hosepipe delivery). The main thing is it helps to stop stokes and thus prolongs life.

[sarniacherie in reply to rjr681]

Thanks for your reply. Everyone's comments have been so positive. I wonder if my GP and cardiac consultant were weighing up the cost when painting a gloomy picture. Enjoy Easter.

[Hidden]

I was on Warfarin for about 5 years without any problem. My EP asked if I had any concerns and I said the main one was a bleed, at which he immediately changed me over to Apixaban saying that it was probably less likely to cause one. He also mentioned my age (66) but can't remember what he said!

I've had no problems on Apixaban either. 

Koll

[sarniacherie in reply to Hidden]

Thank you. I am starting rivaroxaban tomorrow but it is good to know there are alternatives if this doesn't suit me. Enjoy Easter.

[meadfoot]

I have been on rivaoxaban for three years, no issues.  Had extensive dental work and no excessive bleeding and did not stop taking it while having treatment.  I stopped it three days before a ep study as requested by my ep and did not have any bleeding from the procedure.

No one knows the long term effects of relatively new drugs like this but i am alive today and my stroke risk is lessened because if it which is OK by me.

[sarniacherie in reply to meadfoot]

Thank you for your reply. You are right in saying the main aim is to protect yourself from a stroke. I will be starting on rivaroxaban tomorrow, so fingers crossed. Best wishes.

[djroute66]

i also have no protection so i know how you are feeling. even with a chad score of zero. when af shows its ugly self i can tell you its finger crossed all the way. i have read that apixaban when taken starts working within 30 min so if this is true which i an hoping it is. when i finally get an appointment with my the cardiologist i will ask can i have it to go with my flecainide  as a pip if just for peace of mind . dont know if this may help you 

[sarniacherie in reply to djroute66]

Yes, it does help, thank you. I am on Flecainide too and I will be starting on rivaroxaban tomorrow morning. Positive replies about apixaban. Enjoy Easter.

[djroute66]

Glad it as helped sarniacherie I know it seems all doom and gloom at the moment but somehow we must keep positive for the future 

 have a wonderful Easter too ,

[NooNoo14]

I was started on Apixiban in December but had to stop taking it at the beginning of February because several bleeds were found behind my eye (routine eye test). I was taken off the Apixiban immediately and the ablation I had booked for this week was cancelled. My eyes were checked last Saturday which showed the bleeding is still there so, although the doc does not think it is related to Apixiban, I have today taken my first Warfarin tablet.

Although having to go for regular blood tests is going to be a pain (especially as I am still working) I will be relieved to know that the dose can be adjusted when necessary to keep the INR level stable. When I was taking Apixiban I didn't have a blood test so had no idea what it was.

Although this wasn't something I expected or wanted, I do feel 'safer' on the Warfarin. Horses for courses I guess.

NooNoo

[Dodie117 in reply to NooNoo14]

If you can afford it I would highly recommend getting your own machine to check your INR  once you have stabilised. I found it gave peace of mind and meant visits to INR clinic were kept to a minimum. I moved from warfarin to apixaban but would not be upset if I had to change back as I managed it reasonably well.  So goo luck, I'm sure you will be fine on it. 

[NooNoo14 in reply to Dodie117]

Thanks Lallym, that is just what I was thinking. As soon as the levels settle down, I will speak to my GP to see if he will prescribe tha lancets etc if I buy the machine.

[PeterWh in reply to NooNoo14]

No need for blood tests on Apixaban as it works a completely different way. 

[MarkS in reply to PeterWh]

The blood level of the NOACs still varies hugely between people and this has an effect on their anti-coagulation though not as much as with warfarin. Blood tests would be an advantage for NOACs but the real reason they're not used regularly is because they're so difficult to do!

Having said that it's horses for courses, warfarin is best for some people and NOACs best for others.

[NooNoo14 in reply to PeterWh]

In what way do they work differently Peter?

[10gingercats in reply to NooNoo14]

Is it possible the bleeds behind the eye were independent of you taking Apix.?

[NooNoo14 in reply to 10gingercats]

To be honest, I don't think they know. I have an in depth eye check every year at the hospital because of possible Glaucoma. The tests I had done last June showed no signs of bleeds.

I don't think they are blaming the Apixiban, I think they feel that as I have to take anticoagulants for both AF and the eye bleeds (to stop them clotting so they don't cause a stroke or cause the back of the eye to die), it has been deemed that Warfarin might be the best course.

I am not suggesting that Apixiban is bad for anyone else (I was quite happy on it until the eye test) - just me😀

[sarniacherie in reply to NooNoo14]

Medication is not a 'one size fits all'. We are all different and respond in different ways. I hope warfarin suits you and keeps you well.

[NooNoo14 in reply to sarniacherie]

Thank you - fingers are crossed 

[Walison]

I understand your concerns. I was put onto warfarin after my first AF episode, then a year later I was given dabigatran instead. I really didn't feel comfortable that there was no antidote so after a while went back to warfarin and bought myself an INR reading kit (pricey to buy but worth every penny) so I only have to go to the warfarin nurse every now and then instead of every other week. It also gives me peace of mind as I can check it whenever I feel it necessary.  I wouldn't get hung up about bleeding. I've cut myself many times and the bleeding has stopped after a short time with pressure applied. I think the only problem would be a very deep or big cut - then it may mean a trip to A&E . For me it is all about balancing peace of mind and protection against stroke. I guess it is down to what your doctor advises and your own preference really.

[tony85]

My cardiologist prefers to keep me on wafarin than on the newer drugs. He said that they are more problematic if you have a bleeding episode. I have absolutely no problems with wafarin

[angelkisses50]

I have taken warfarin for years, but hated the monthly blood tests and not being able to eat greens unless I ate them every single day.  My new EP/Cardiologist put me on Pradaxa and it was fine, but had him change me to Xarelto because of the expense of Pradaxa.  7 months after my ablation he took me off anticoag and put me on an aspirin.  After talking to other people on here and searching the internet regarding the use of aspirin and my hypertension, diabetes and age, I called my EP/Cardio yesterday requesting he put me back on Xarelto. Still waiting to hear from him.  AF is bad enough, I certainly don't want a stroke to go along with it.  

[sarniacherie in reply to angelkisses50]

My cardiologist took me off aspirin saying it gave no protection from a stroke, so keep pestering. It's your health and well-being after all. Good luck.

[Scorer]

I have been on rivaroxiban for 18 months now with no problems. Had dental treatments including extractions and also a right hip replacement. I also have regular blood tests for my rheumatoid arthritis and have never had prolonged bleeding. Occasional unexplained bruising. Gives me peace of mind that my stroke risk is reduced.

Best wishes Pam

[sarniacherie]

Thanks Pam. This forum has been so positive about rivaroxiban. I started them yesterday so early days yet. The bigger picture is reduced chance of a stroke which is important. Enjoy Easter.