Hi all. First post here. I was diagnosed with Hypertrophic Cardiomyopathy about 14 years ago, into AF about 5 years and have had 4 cardioversions before leaving it as chronic about 2yrs ago. After years on Warfarin my consultant agreed as my chads/chads2 score was 0 I could go back to Aspirin which was great.
Now 2yrs later the new NICE guidelines have come out and my GP now saying they don't recommend Aspirin any more and to consider back to the rat poison.
My score is still 0 but they say I do have some risk due to the hypertrophy (yet this is not covered on the scoring system!).
Still in 30s, like travelling, like a few drinks etc which has been fine the last two years and now this bombshell. If I have to start again on Warfarin, loading dose, weekly tests, then fortnightly and so on.. (For a 5th time! ) so I've said no especially as I'm due to fly out on hols in a few weeks time and my travel ins will cover whilst on Aspirin but not on warfarin until back to a stable INR etc...
I've countered to the GP if Dabigatran or Rivobaxan would be more suitable for me which they seemed to agree but said would need consultant to authorise as I wasn't high enough on scoring to be prescribed it!!??
Anyone else in the same position or could offer some advice?
Greatly appreciated,
Craig.
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Craigb
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Well that's my main driver ectopic1. I have a holiday/flights booked. Insurance arranged, AF and cardiomyopathy declared. They asked on anti coag that requires regular testing. I said no as was (and still am) taking 150mg Aspirin. So NICE using CHADS now says nothing at all, not even Aspirin. If I switch to one of the new ones my insurance is still valid, Dabigtran etc doesn't need tests, I could still have a drink or two on hols without worrying on levels..
Should add the GP said "I should consider further anticoagulation" . Ideally would be stick with Aspirin until after my hols then onto one of the new ones.
I have also just taken out some travel insurance. My declared conditions are aortic valve replacement and arrhythmia. The question I was asked was whether I take a medication for the arrhythmia (other than aspirin) which requires regular blood tests. The answer to that was no, as I take Rivaroxaban. My premium was the same price as someone without these conditions as I am not currently awaiting any procedures, just taking medication for the AF.
I was in a similar situation to you this time last year - AF was dormant, though medical conditions declared for insurance purposes.. My CHADS score (all versions) was zero. I asked my GP to take me off warfarin and she gave me aspirin instead. Cardiologist later insisted on proper anticoagulation as I have an enlarged left atrium and it was she, not the GP, who authorised the NOAC. She said that CHADS didn't apply to me. It is your overall heart health that's the deciding factor. Why would a zero score mean that you could have warfarin but not a NOAC? Seems like a red herring to me. You should check the prescribing protocols for your local clinical commissioning group.
Thanks Mrspat. They did say they could only prescribe a NOAC with a CHAD score of 1 or higher unless a consultant instructed them so have been trying to get hold of the consultant. How have you been on Rivaroxaban, I had some bad spells on Warfarin, especially as I seemed to cut myself more shaving as soon as I started on it then in years before! Lol I like the idea of the shorter half life if ever I needed to stop quicker.
I have been on Rivaroxaban since April. Any acquired bumps and bruises have been no worse than normal. Even managed to shut my little finger in a car door with only a blackened fingernail to show. I used to bruise worse on aspirin.
I hated warfarin. Made my hair fall out, gave me a dry and itchy scalp. Couldn't get a stable INR and I was very worried about drug interactions,especially when I needed to be on antibiotics for a while. I had to make it perfectly clear to the cardiologist that I wasn't going to spend the rest of my life going for blood tests every few weeks. I had done my research on NOACs including NICE guidelines. Fortunately the cardiologist was very sympathetic to my point of view. Had she refused, I would have found myself with some very difficult choices to make. It wasn't until I asked the direct question that anyone told me I was supposed to be on anticoagulation for life.
Thanks. Your advice has been very useful. I know clearly now what I'll accept . Having started and stopped Warfarin 4 times! Yep (4 times) before each cardioversion and then stopped a month or two after back in sinus only for months later.... Not doing that again. Even when I told them start 1, 1.5,1,5,1.5,1,1,1.5 tablets no, was 1 then week test, then add another then week ....
Hi Craigb sounds like your GP is applying local restrictions about prescribing NOACs, usually cost driven, and that maybe why they will only prescribe on specialist advice. I have been on Dabigatran for about 10 months now, no bruising or bleeds and m very happy on it. Dabigatran costs about £60/month versus Warfarin which is about £6 I think (from memory). There was an interesting thread about NOACs v Wafarin and the cost a fe months ago.
I agree that the insurance costs is a definite plus if you travel a lot, never mind the hassle of Wafarin, which I have never take. As went directly from aspirin to NOACs.
Interesting reading, Mrspat. If my cardiologist recommends anticoags for life at my 5 month post ablation, I plan to wail and nash my teeth and say I really don't want to take warfarin but I'd be prepared to take one of the NOAC's. All this dietry stuff does my head in!! Good luck, Craig.
I have just been allowed to go on to Rivaroxaban although not strictly falling within the Nice guidelines. My situation is that I have a CHADs score of 1, age being the only scoring factor. Previously on flecainide, bisoprolol and aspirin. Following the revised Nice guidelines about anticoagulation, the GP agreed that I should be anticoagulated, but was not clear that NOACs would be within the new guidelines.
As a retired solicitor, I read the guidelines, which say at paragraph 1.5.2 that anticoagulation should be CONSIDERED for MEN with a CHADs score of 1 and OFFERED to people (ie men and women) with a CHADs score of 2 or above (1.5.3). The guidelines then go on to deal with which anticoagulant is recommended, listing four alternatives (three NOACs and a "Vitamin K antagonist" which I take to be warfarin). The three NOACs are only recommended where there are additional factors such as diabetes, hypertension, prior stroke, heart failure, or age over 75 (I don't fall into any of these categories). I therefore conclude that, applying the new guidelines strictly and ignoring the Patient Decision Aid, I am not a recommended candidate for NOACs.
Not wishing to take warfarin unless there was no other choice, I was referred to the consultant at the arrhythmia clinic at St Mary's Paddington, and he authorised NOACs which I shall soon be starting.
To be fair to my GP, I don't believe that cost was a factor to the practice.
On the separate question of travel insurance, I am always asked if I have been taking all prescribed medicines or following all prescribed treatments, so I assume that some insurers will load the premium if given a negative answer to this question.
Now there's a thought. Holiday insurance. !!
My husband in his 70's and really fit has a left bundle branch block. Shows up on ECG.
After a GA for hip replacement he developed PAF. Treated for 7 years with aspirin & Digoxin ........ Aspirin stopped earlier this year & we all know why. Episodes of AF very very few & far between. ECG & 24 hour tape shows no AF. So husband to continue with Sotalol in place of the Dig....... but nothing else.
Gp says husband no longer has PAF..... However I have to keep a watch on his pulse.... if showing AF go to surgery or A&E for ECG. Triffic.
Maybe the GA was the cause of the PAF but some how thinking about holiday insurance I'm getting a little concerned.
That was a really interesting post, realdon. I asked to have rivaroxaban when I was first told I would have to take warfarin, but was told it was too expensive, and I understood that it wasn't an option for me. At that time I had (and still have) a ChadsVasc score of 4. (Diabetic, hypertension, female and over 70)
I have recently been to see the consultant (about ectopics), but didn't think to query the warfarin issue again. I have a new gp now, and I'm wondering if I can put the question to her again. I'm going print the relevant part of your post, and take it along with me when I see her next. I have to admit, my main reason for wanting to change is because my hair is getting very thin and my scalp itches continually! But I don't think the doc would consider that important. The fact is, I have been relatively stable on warfarin, and I think I might have a disagreement on my hands. It's important to me, however, because the situation is making me unhappy. What does anyone else think? BTW, what is the 'Patient Decision Aid' and where can I find it?
Interesting post. If you can't get NOACs have you considered getting your own machine and self testing. Once you have reached INR over 2 you would only need to get tested every 2 to 3 months and in between do your own. You can also take it with you when travelling and it gives peace of mind.
Further to this discussion, I note that the NICE guidelines (1.5.6) state that (paraphrased) '.....apaxiban for prevention of stroke..........in people with non-valvular atrial fibrillation.........' Can anyone tell me what non valvular af is?
Re non-valvular - interesting question. Doctors don't quite agree - there's a surprise. By one definition, it is AF caused by a faulty valve. By another definition it is AF related to problems with the mitral valve only. Some doctors say that you can't have a NOAC if you have had a valve repair/replacement of any kind. Others say that this only applies if you have had a mechanical valve replacement rather than a tissue valve.
I have had a tissue aortic valve replacement due to a congenital condition. My choice was partly driven by not needing anticoagulation long-term after the operation. No one seems to know if my AF, which I had pre and post operatively, was acquired directly as a result of the underlying condition. The cardiologist authorised Rivaroxaban, which my GP queried as she had a different interpretation of non-valvular. However, she clarified with the cardiologist before agreeing to prescribe.
Thank you for replying Mrspat. I am going to make an appt with gp, and see where I go from there. I have been told that I have a very slight mitral regurgitation which I need to discuss, I think. But nothing like a repair or replacement.
Dear Craig, I had a low CHAD score but because of atrial hypertrophy and AF my EP consultant recommended I take Rivaroxaban. He prescribed the first three months and my GP has continued to prescribe this for me.
It's convenient because I don't have to go to frequent appointments for blood tests or worry about foods I should/ should not avoid with this medication. I am older than you, 57, but the medication hasn't impacted on my life - my heart condition has and I am very slowly coming to terms with this. I am determined to live life to the full. I used to travel a lot and hope that trips further afield will happen again in the not too distant future. I still work full time but recognise I need to be better about pacing myself.
Hope you get your medication sorted out soon. My consultant was of the opinion prescribing the anticoagulant medication was about looking at the whole picture and not restricted to rigid guidelines.
I asked my Consultant if I could have Rivaroxaban ( when I was diagnosed with PAF last year ) as I did not want to take Warfarin. He agreed , no problem. Keep pushing for it , the main reason for refusing to prescribe it , is cost !!
Just to let you all know. It took the NHS lots of fax/posted letters between people but I've now got my first tabs of Rivaroxaban. Despite having been on Warfarin for many years around 2007-2010 ive still got to visit the anti coag clinic again first. That appointment was a further two weeks in planning and I'm off there this coming Tuesday! My cardios note just said recommend I start Rivaroxaban and stop my aspirin..
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) so I've said no especially as I'm due to fly out on hols in a few weeks time and my travel ins will cover whilst on Aspirin but not on warfarin until back to a stable INR etc...
. Having started and stopped Warfarin 4 times! Yep (4 times) before each cardioversion and then stopped a month or two after back in sinus only for months later.... Not doing that again. Even when I told them start 1, 1.5,1,5,1.5,1,1,1.5 tablets no, was 1 then week test, then add another then week .... 
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