AF, Warfarin & Stroke

As we are constantly told. If taking Warfarin, it will stop you from having a stroke. Well it doesn't. This is my story. Yes I do have AF and have already had 3 oblations. Earlier this year whilst at work I wasn't feeling very well and sat down. One of my colleagues didn't like the look of me and went to ask one of the nurses in the clinic where I work to come and have a look. When they came they immediately thought I was having a stroke. Well I couldn't talk for an instance. By the time I went to A&E everything was ok, although I didn't look very well. After the usual tests I was told it's just AF and nothing we can do go home. The only  thing was my  INR was 1.4 nothing unusual there then. In Sept last year again at work I was unwell. I thought I was having either AF or heart attack symptoms. When I got to A&E, I went into see the triage nurse. That's when I had my stroke. Someone up there was looking after me. I lost everything on my right side and my voice. Again my INR was very low 1.3. They said I was very unlucky to have a stroke whilst on Warafarin but that's not how I felt. I'm now on the road to recovery and on Apixiban. How can I trust any blood thinners now. How many others have this happened to? I have also asked the specialist about how you can monitor your INR apart from usual blood tests. I was only getting them every 3 months. I've also had them on a weekly basis, They cannot answer this one. One other point, my heart specialist from a certain London hospital was told about my stroke but there has been a deafening silence. That's the NHS for you. 

Hi I was just thinking about this when your comment popped up , do you feel safer on Apixaban ? I was on Rivaroxaban but came of after finding no antidote , but iv heard good reviews about Apixaban and was thinking although my INR is pretty stable at 2.4 - 2.6 etc it affects lots of thing like food etc , it would be good to know what you think , regards Bes

Sorry I mean I'm now on warfarin.

Wow! Thanks for sharing. What a story!  Hope you fully recover!

Hello Bes. Although there is no antidote yet for the new drugs, they are certainly better than the old rat poison. My INR was usually the same as yours. I would discuss your worries with your doc. Certainly with Apixiban there is no longer any need to get as many blood tests. I just don't have any confidence in whatever one I'm on now. 

I had really bad bleeding with Rivaroxaban nose bleeds gums etc it was awful but I heard Apixaban as an antidote? I was rushed into hospital with my gall bladder they wanted to operate but couldn't because of the Rivaroxaban and being unsure I then read more about this drug and it wasn't good , I get checked every week now and try to keep it above 2 , I hope you are well now , Bea

I'm just venturing a thought here .... isn't 1.3 / 1.4  a little bit low ?  Weren't your tablets adjusted so as to get your INR a bit higher ?  For example, my therapeutic range for avoiding stroke with warfarin is an INR between 2.0 - 3.0, or maybe even 2.5 - 3.5.   Really sorry to hear you've had the difficulties you outline - the whole thing with ablations etc. seems to be at an exploratory stage &, as we are all different, maybe that explains why some outcomes are successful and others, not.  I hope you'll have better luck on Apixaban.  I myself am thinking about changing to Apixaban/Eliquis, rather than Dabigatran or Rivaroxaban as, from what I read, both of the latter are contra-indicated for kidney & liver.  But it would be interesting to hear what you, & others, think of any of these NOACs, especially if you've had experience of them.

Pradaxa,one of the newer drugs does, in fact, have an antidote.  It is the only one of the newer ones that has.

To begin, even if you were on therapeutic doses of warfarin, it is still possible to have to a stroke; however, your INRs, as mentioned by Zena2016 were not therapeutic - thereby increasing your risk of stroke.  I used Apixaban without difficulty with full confidence in its therapeutic efficacy.  Regarding reversal, there is an agent that reverse its affects, but I don't know if it's commercially available yet. MFG

Did you have a clot or a haemmorhage stroke?

Hi GrumpyPops,

Sorry to hear of your trauma and I wish you a speedy recovery.

​If my home testing device was giving me low INR readings like 1.3 and/or 1.4 I'd be in touch with my Warfarin clinic pronto ! Far too low.

Didn't you have regular INR blood tests and checks ? Weren't yopu ever told of your theraputic range ? and your INT target.

​My theraputic range is 2.0 to 3.0 (others maybe told 2.5 to 3.5) and my INR target is 2.5. If I go outside this range my INR clinic always tweak my dose and review my next test date ... all very closely monitored.

May the force be with you.

John

 

the INR reading should be between 2 and 3 preferably 2.5 so I agree with you1.3 / 1.4 is too low.  

 

Hi GrumpyPops,

Thanks for sharing your story.

I am on lifelong anticoagulation after episodes of DVT'a and PE's.

On the advice of a Consultant Haematologist, I was placed on Apixaban. I have been taking Apixaban for approaching 2 years now without any side effects.

Apixaban is a proven method of anticoagulation, with a reduced risk of internal bleeding in comparison to Rivaroxaban.

With regard to the issue of antidote, I do believe that one has been developed and due to be authorised by NICE. However, Apixaban does have a relatively short 'half life' - the time taken for the drug to leave the body and all UK Hospitals are briefed with regards to the management of a bleed whilst on Apixaban.

Good luck!

I have to say I've only understood it helps prevent strokes on the basis that when in AF the blood is pooling in the heart and can cause clots if beat all over the place.   I can appreciate that your recent episode must have totally rocked your confidence.    I am currently on Apixaban having previously had warfarin and I have to say I think despite the fact I am quite unwell that the Apixiban is better for me than Warfarin was.    I was more legless on warfarin.      They put the fear of god into you about apixiban and no antidote I even wondered how I would be with a nose bleed but I have had no problems.     Just hope I don't have a nasty fall I guess!    Have had an operation recently and had to stop 48 hours before.   Endoscopy just stopped on morning.   Ablation and just stopped on morning. I've had a 2nd ablation and they plan to stop apixaban in 2 months and coming on the forum I am a bit more aware of the stroke risk but I still feel I want to see how I am when off the tablets even though of course I will be extra aware of situation if I start AF again!     Time alone will tell how it all works out.     

I have only joined this forum recently and I find your comments very interesting if slightly alarming. Let me get my background out of the way first; I am 65, living in the UK, have had a prosthetic aortic heart valve since 2005 (I think!) and thus have been on warfarin ever since (I understand that Apixiban is contra-indicated for prosthetic heart valves), my therapeutic INR range is 2.5 – 3.5, I was diagnosed with AF about 18 months ago, prescribed 240mg Slozem.

Like others when I read that you had a stroke and your INR was 1.3 my thought was “that’s not far off the norm of 1.0”. From my minimal research I understand that someone with AF is 5 times more likely to have a stroke than someone who does not have AF and that this is reduced by two thirds by thinning the blood. So I guess my question is what is your therapeutic INR range?

I was also perplexed that when you asked about monitoring your INR more closely they didn’t mention that you can self-monitor by using a home test machine from Roche. I realise that you had asked about ways of monitoring INR other than using blood test so maybe that is why they didn’t mention it. Also since INR is a measure of the prothrombin time which measures how quickly blood will clot it means that the blood has to be tested, or measured if you like, somehow.

I am an IT consultant and often work at locations away from home so to have a blood test at the clinic or hospital every so often means losing a day’s fees; the cost of a test machine was a few hundred pounds so it seemed like a good option to me. Actually it was my cardiac consultant surgeon that suggested it to me. I just measure my INR, email my GP surgery and they respond with a dosage and when to next do a test. If I feel a bit twitchy that my INR might be too low or high then I do a test and see. It works for me.

One last thing, I don’t understand what you mean by being “…. more legless on warfarin.” what unwanted effect did warfarin have on you, did it make you unsteady on your feet? or am I being a bit slow on the uptake here?

I hope the above has been of some interest to you.

From my perspective when I learned more about what AF is and it’s effects, i.e. increased chance of stroke, I was a bit perturbed, I still am if I’m honest with myself. Still, onward and upward!

Regards,

Phil.

Hi. I take rivaroxaban, 20 mg daily. I recently had to have a series of bloids done as liver function tests were a bit out. The blurb in the meds alludes to this as a possible side effect. I have a bit of teeth brushing gum bleeding and bruises tend to be bigger and take longer to go. Otherwise i seem ok and been on them 16 months now. Would like to stop, and hope to at some point after next ablation in two weeks.

Hello. Zena 

Thanks for the post. You are correct, my limits were the same as yours. The problem is what are our levels on the days that we are not tested. Even the docs admit that this is a problem. As for The different treatments everybody is not the same. Some work for some and not others. It is all very confusing.

Hi. I had a clot stroke. Lots of small ones.

Thanks for clarifying that. I asked because its a fine line with taking blood thinners because you want to prevent clots but not cause a bleed. I have chosen to not take Apixiban anymore as my blood was too thin and l was bleeding from multiple sites and my dad had had a cerebral haemmorhage. A hard decision but l am happy with it. Hope you are on the mend and achieve full recovery.

I would not be happy with your medics if they're happy with INR of 1.3/1.4/. As others have said Warfarin INR should be in 2.0/3.0 range to be effective. against stroke.