NICE GUIDELINES Patient decision aid Atrial fibrillation: medicines to help reduce your risk of a stroke – what are the options?

[Bazillion]

I am writing this because I am amazed at how few people seem to be aware of the National Instituteof Clinical Excellence Patient decision Aid Atrial Fibrillation.

This document was written for patients being advised to take anticoagulants to make an informed choice after being given all the information.Unfortunately few Drs bother to refer patient to this advice ,either through ignorance or arrogance.It is a long document,well worth the read a few exerts I have included below

guidance.nice.org.uk/CG180/...

Treatment options to reduce your risk of having a stroke

Many people with AF are asked to think about taking a medicine called an ‘anticoagulant’. This is to reduce their risk of having an ischaemic stroke caused by their AF. Anticoagulants make the blood take longer to clot (sometimes called ‘thinning the blood’). This reduces the risk of a blood vessel in the brain becoming blocked by a clot. Anticoagulants also reduce the risk of blood clots causing problems elsewhere in the body. Treatment with an anticoagulant is usually long term.

You can choose whether to take an anticoagulant or not. If you decide to take one, you will then need to decide which one you want to use. This decision aid is intended to help you weigh up the options and come to a decision that is right for you.

If you choose to take an anticoagulant, you can choose warfarin or one of the newer drugs such as apixaban, dabigatran or rivaroxaban. Warfarin has been used for many years to reduce the risk of stroke in people with AF. It belongs to a group of drugs called vitamin K antagonists. Apixaban, dabigatran and rivaroxaban have become available in the past few years and work in a different way from warfarin, so they are often called the non-vitamin K oral anticoagulants, or NOACs for short.

There is a lot of information in this decision aid that you will need to think about before you decide whether to take an anticoagulant or not, and if so, which one you want to use. If you have just been diagnosed with AF you will need to make a decision soon (preferably within a few days), but most people do not have to make a decision immediately. You may want to talk your decision over with your health professional, your family or your friends. Treatment with an anticoagulant is usually long term, so it is important that you are happy with your choice. Once you have made a choice, you can change your mind later if you wish or if your situation changes. Your risk of having a stroke and having major bleeding can also change over time, so your healthcare professional will review your risk once a year. If you decide not to take an anticoagulant now, you should think about this decision again then.

[doodle68]

Hi Bazillion I think many members in the UK (we have a number from overseas) are aware of the NICE guidelines and have quoted them here with a link, I know because I am one of them. If you do a search in the box above there are at least 20 pages referring to them.

The NICE guidelines are currently being updated and the new full guidelines are expected to be published in September 2020.

I think it is not a case of people being unaware of the 'guidelines' , I am sure many like me have read them then posted on here to learn about personal experiences.

[Bazillion in reply to doodle68]

Well if people do know about the guidelines why are they not making informed choices and feeling in a catch 22 if they don’t do what the Dr tells them?!The Drs roll is to give us all the information to enable you to make a decision. As you know from many members most Drs can’t agree , one says you need it one says you don’t , but it’s not their decision it’s ours. That’s why the guidelines are there to help us make up our own mind. Until everyone is aware of them people will still do as they are told rather than make an informed choice.

[Hidden in reply to Bazillion]

I think the situation has changed very much and five years ago the NOACs were regarded with great suspicion. They were not prescribed at my surgery and the options offered to me were, pretty well, Warfarin or almost certain catastrophe.

[doodle68 in reply to Bazillion]

Brazillion I think people are making 'informed choices' but they still need to seek reassurance from others about their choices.

Stunned by a diagnosis of P-AF I was advised by my Dr to check out HASBLED and CHA₂DS₂-VASc (both of which I had never heard of ) and I also read every detail of the NICE guidelines so I was well 'informed' but I still felt unsure about choosing to accept any anticoagulation.

It was only by reading about the experience of others that I felt I was making a fully informed choice.

[CaroleF in reply to doodle68]

I think doodle68 has hit the nail on the head here ….. being 'well informed' (ie having used the information and the decision-making aid) is all well and good, but going on to make the right decision for oneself is not an easy matter since it necessitates weighing up influencing factors where the outcome can never be known with any certainty. When that difficulty is compounded by receiving contradictory advice from medical professionals I think it's even more understandable that people find it hard to make up their minds and thus ask about the views and experiences of other AF-ers.

Just being told facts based on statistics doesn't automatically make it easy to make a decision. 'Facts' can be, and are, interpreted differently for reasons that are complicated and specific to each individual.

I think it's right that we should point people asking about anti-coagulation here in the direction of the NICE guidelines and the decision making tool; it's true that each person has to make their own decision based on this ….. BUT I think we all need to recognise that for many people it's still a hard decision to make.

[Bazillion in reply to CaroleF]

I am with you all the way on this Carole. The bottom line is the easy option is “to do as we are told” then we don’t have to make a decision.The point I am trying to make is we don’t have to “do as we are told “we have a choice ,and from the replies I have received many People are not being given the information to make an informed choice.

My wife is a retired nurse and when she had her “Episode” she was just given the prescription for Apixaban, Bisoprolol and a statin and told she would be on them for the rest of her life.

Not my wife! She worked on a research project for Statins and wouldn’t touch them with a barge pole ,the bisoprolol caused her heart rate to drop to 33 and exacerbated her asthma, so she is left with the Apixaban.She agreed to take this for a year and if no further episodes of AF would stop it.She knows that you can have episodes without knowing ,but takes her pulse regularly during the day and been fine.

Ultimately the decision will be hers.

[ruuthmo]

I have been taking Warfarin for 5 years now, my INR has always been erratic and I am wondering whether to ask for another treatment. Anything seems to trigger it and the current dose is 5.5 - 6.0 which seems rather high to me. So any advice on which way to go would be most welcome. I live in hope that another treatment may be discovered which will take away the necessity of constantly loading my body with drugs.

[ILowe in reply to ruuthmo]

Do not worry about the size of the dose. There is 100% agreement that dose is a very individual thing. That is why the initiation to Warfarin is so complicated, especially if they are in a hurry.

Doctors disagree. Yes they do. Behind the scenes they sometimes formalise their disagreements using a scale. To confuse matters, there are several two different questions. I will post separately when I have found a clear summary.

INR levels can appear to be erratic and confusing. A lot depends on your expectations. Presumably you are trying to stay in the range 2-3, but anything from 1.5 to 5.0 is nothing to bother about. In fact, an expatriate who self dosed reported swings of over 2, without changing the dose, and the article concluded that in some people, the natural biological variation can be >2. You can find it issuu.com/munglani/docs/joo...

and, easier, scientificlanguage.com/

[seasider18 in reply to ruuthmo]

When I was taking Warfarin I was on 8mg a day. The nurse told me that some people got away with only 1mg.

[Bee-Honest in reply to seasider18]

I was told it can be age related. The younger you are the higher dose you need. I take 4.5 and 5.0 alternate days.

[seasider18 in reply to Bee-Honest]

Not in my case I was over 75 when first prescribed it.

[Bee-Honest in reply to seasider18]

I was about 55 when told this, and normally the youngest in the Warfarin clinic!

[IanAnderson44]

Hi Bazillion,

Afraid I can't help too much as my experience was governed by the beta blocker I was prescribed.

I was given Bisoprolol & Warfarin at first when originally hospitalised with AF.

I had a bad reaction (breathlessnes etc.) and it was assumed I was allergic to Warfarin.

I was changed onto Rivaroxaban.

After a few days I was discharged as my pulse had steadied to a more reasonable pace.

A few weeks later I went back for a check up and was re-admitted!

My Bisoprolol dosage was doubled and I was again discharged within 3 days.

I still felt unwell and went to my GP who changed my beta blocker to Metoprolol.

After a couple of weeks I was so unwell I was taken back to hospital by ambulance still suffering breathing difficulty.

I was taken off all medication (except Insulin) and after 24 hrs was given 40mg of Sotalol and nearly died after about an hour!

Maybe I'm being over-dramatic but that's how I felt and I had 3 nurses, the ward doctor and the cardiologist all putting masks on me, giving me injections and taking all sorts of readings.

It was finally decided I was allergic to the entire range of that type of beta-blockers (anything ending in "lol")!

I was taken off Rivaroxaban and placed on Verapamil (a calcium based beta-blocker).

After a few weeks, I found my BP dropped as low as 90 over 50 so my GP took me off everything (again, except Insulin).

Back at the cardiologist for my check up, he told me to go back onto 75mg of Aspirin daily (which, up to this AF incident, I'd been taking for over 20 years) and I haven't seen him since!

As I say, all this probably doesn't help your query but it is my only experience of Rivaroxaban.

Hope you keep well, regards,

Ian Anderson

I

[opal11uk]

I am currently in the process of reducing my heart drugs, namely Bisoporal and Disopryramide by half and would like nothing better than being rid of anticoagulant. I have a pacemaker, fitted almost 3 years ago and apart from a few TIA's have felt well, especially after losing 3 plus stone however I had a stroke in 2000, induced they said by my P/A/F and told anticoagulant was for life, I hate taking it but feel that it is protection against further stroke. The pacemaker does stop my heart rate from going too low (beneath 60) but would not stop me going into A/F that's what the heart drugs do and so far so good. I am now debating, after reading this thread, if I should try reducing/stopping the anticoagulant.

[Hidden in reply to opal11uk]

I believe anticoagulant for life means life when you have a pacemaker.

[Dodie117 in reply to opal11uk]

I would have thought that if you have had TIA you are at an even higher risk of stroke so under no circumstances would I come off it if I were in your shoes. Which anticoagulant are you on ? You might want to look at a different one if it is causing problems.

[opal11uk in reply to Dodie117]

I was on Warfarin for 17 years and due to TIA's (which they saying might be migraines) I was changed over to Pradaxa and I did not experience problems with Warfarin and neither do I with Pradaxa

[Dodie117 in reply to opal11uk]

I am on apixaban and had two suspected TIAs in the past. I had an ablation in 2013 which so far has been successful 🤞. I can off meds but stay on anticoagulant and consider it to be my lifesaver. I dread a serious stroke and this at least reduces the odds. Good luck in your decisions but be careful 🍀

[opal11uk in reply to Dodie117]

Thank you, will stay on it.........

[KMRobbo]

I was aware of the Nice Guidelines, in fact I have posted the calculations for Chads vasc and Haslebled twice in response to queries on this forum. I also have what I think is a good EP (well he has halted my AFIB and AFlutter) and he advised I should come off A/C's as my chads is zero. At this point I followed his advice.

[Bazillion in reply to KMRobbo]

Stick with him he’s on the ball!

[Hidden]

From my point of view I have gone to and EP who I am trusting to do an ablation and therfore why would I not trust his advice re anti coagulation. He has explained to me why i need to be on it, if I doubt his decisions why would I trust him with my life in the operating theater?

[haltemprice]

Hi Bazillion i was unaware of this, i was put on warfarin about 15 years ago after having a PE and having AF all my life, about 4 years ago out of the blue whilst seeing my GP he told me i needed to come off the warfarin and change onto one of the new ones, he recommended Rivaroxoban which is a constant dose and no weekly or bi-weekly checks, unlike warfarin which i took and the dosage would change from the standard 5mg which i started on and was taking 13mg at one point, the increase was done over several years,

Be aware that the new drugs if i am correct have no antidote if too many are taken. I have recently found out my kidneys are damaged not sure if this was why i was taken off the warfarin,

[Tobytucker in reply to haltemprice]

Hi i was advised by my cardiologist on 1st Oct 2918 that as I had CKD3 that I should consider Apixaban. Perhaps you should speak to your go again about this.

[geordie01]

I was put on Rivoraxaban about a year ago due to constant P-AF also 7.5mg Bisoprolol.

Last April or so I developed a sever cough in the morning felt like i was drowning coughing up blood stained phlegm. Seen 1 nurse 2 gp's who diagnosed lung infection and 3i AM different antibiotics no better. Was referred to a respiratory consultant that took 3 months to get an appointment.Had an endoscopy camera shoved into my lungs nothing found.

Prior to camera check I was told to lay off Rivoraxaban 5 days prior to it and cough improved a lot and I felt great no tiredness went back on it 2 days later and cough returned with a vengance and felt like crap again. So i stopped it again and went back to GP who told me probably caused by Rivoraxaban and changed me to Apixaban. But I did not start taking it as i was still coughing up slight blood stained phlegm on occasions.

Went back to see a different GPwho has a keen interest in cardiology yesterday who advised me not to take it whilst still bleeding and to take a low dose aspirin instead as that is what she would do if was her and to be honest most doctors would if that was their choice.

So there you go 7 months of feeling totally crap.

[Dodie117]

You do know that aspirin is not an anticoagulant and therefore is not considered appropriate for stroke protection in AF patients.

[geordie01 in reply to Dodie117]

Yes I know that but doctor say's my chads score is so low that it should be ok she really explained it all to me. She said I could try the Apixaban when i have stopped coughing blood.And before these noacs were about every telly doctor was advising people to take a low dose aspirin.But that does not feed the cash hungry drug company's