Unable to take anticoagulants, update - Atrial Fibrillati...

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Unable to take anticoagulants, update

roger1952 profile image
36 Replies

Saw my cardiologist yesterday at the hospital.

He explained to me why he decided not to put me on anticoagulants.

He stated that anticoagulants do not have anti platelet properties and because stroke blood clots mainly occur in a clot that is released from the upper right chamber (in some sort of reservoir) in the heart that blood pools in when you have AF, this is the most common area where the blood clots.

Aspirin on the other hand does have the anti platelet properties that will reduce the chance of blood clotting in that area by upto 80%. Anticoagulants do not prevent blood clots in that area. It also reduces the overall risk of a stroke by 40%, admittedly not as high as the 70% of a anticoagulant.

He also said that the combination of aspirin and a anticoagulant was simply asking for trouble and he would never use that combination under any circumstances.

He also stated that I needed aspirin because I have a stent in my heart to stop the stent from furring up causing another heart attack.

Apparently my blood is thinner than normal anyway as I get the small red blotch bruises on my hands when I am on aspirin like my father-in-law has and he is on warfarin.

He said my stroke risk was 2.1%. And another reason he was against the newer noacs was because there is no antidote. Plus you cannot take aspirin with warfarin.

So I was satisfied with his decision.

I am now waiting to have a echo cardiogram and a full 13 lead ecg to confirm I have AF. If I do have AF he will look at other ways to correct it.

The anticoagulant I was on "Rivaroxaban" is banned in Scotland by the way as it is regarded as unsafe.

Regards

Roger

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BobD profile image
BobDVolunteer

Hi Roger. Well I have to say that your cardiologist does have some odd ideas. I know of many people who are on both aspirin and warfarin especially if they have artificial valves. Yes aspirin is needed f you have a stent but for stroke prevention it has been proven to be about as useful as a chocolate fireguard which is why NICE stopped recommending it in 2014.

Scotland need to get into the real world if they ban drugs accepted just about anywhere else. OK NOACS have no antidotes (although there are now several which do) but the risks of bleed is very small and contrary to what people think reversing warfarin is not that quick and easy.

Bob

MarkS profile image
MarkS in reply to BobD

I agree with most of what you say, Bob, but I have to correct one point. Warfarin can be very easily and rapidly reversed with Prothrombin Complex Concentrate (PCC). The effect is pretty much immediate.

This treatment is standard practice in NHS hospitals for severe bleeding in warfarin patients - see the guidelines at the West Suffolk Hospital:

wsh.nhs.uk/AboutUs/FOI/FOIR...

The problem with any NOAC reversal agents, when they are eventually produced, will be whether hospitals will stock them (particularly if they are expensive) and have them as part of their standard procedure, especially if each one requires a different reversal agent.

Mark

Annekw profile image
Annekw in reply to MarkS

NOAC `s have a short shelf life! Eg Apixaban is taken every 12hrs otherwise you risk being unprotected!

It is now used in most countries that can afford it!

Aspirin can cause stomach bleeds which are much more dangerous !

MarkS profile image
MarkS in reply to Annekw

That still means with NOACs it'll take at least 24 hours to get down to the sort of level in your blood stream where clotting can occur.

Aspirin in not good at stopping clots in those with AF, but the key point is Roger has a stent. That is what gives him most risk, and aspirin is very good at reducing risk with stents.

PeterWh profile image
PeterWh in reply to MarkS

Interesting document though it is actually almost 3 years out of date (I suspect little needs to change).

Actually, in my view, there is one aspect that is missing in that it does not instruct lower dose where people are having a transfusion.

That said just ask doctors or consultants how often they have needed to give someone vitamin k? In fact most never. If there is a major bleed they probably won't even bother with giving vit k (a) because of the lack of time and (b) if they are giving someone a blood transfusion then the INR is going to drop quite rapidly anyway. If you have 10 units of blood in your body and they give you three units then a third of the blood will have been replaced by ordinary blood. It is the same if on a NOAC!!!!

There a numerous techniques that they use to stop severe (aka major) or medium bleeds. In fact most major bleeds occur outside of hospitals and as I understand it paramedics don't have access to vit k. Obviously bleeds associated with operations excluded.

I was told that the area where there is a higher risk if you are on Anticoagulation is is you are in an accident or fall and there are internal injuries that cause bleeding. Even then the is some comfort because if you have major internal bleeding you are unlikely to survive. To me the slightly higher risk is someone has a bad fall and bangs their head which causes internal bleeding in the brain.

An interesting fact would be to compare the number of people who are on Anticoagulation who die from bleeding compared to those who are killed on our roads every day. I fully suspect the later is many many times the former so to that extent the logical conclusion would be that people on Anticoagulation should never leave their home!!! Unrealistic!!! To be a bit more accurate you would have take out of the former's numbers those who would have died even if not on Anticoagulation.

If it was really that dangerous or risky do you think that NICE would have approved NOACs without an antidote?

I am not medically qualified.

Beancounter profile image
BeancounterVolunteer

Whoahh.

Sorry Roger but there are so many inaccuracies there, not sure if that is from your doctor, or your recollections of what he said.

With stents in any case, usually as I understand it Anti-coagulants are not used, and I am not medically qualified. However

It's the Upper left not right in AF and it's the left atrial appendage when the clots can form

Aspirin is almost useless against AF stroke clots not anti-coagulants Per NICE guidelines only anti-coagulants protect properly against AF related stroke.

Aspirin can be used with anti-coagulants in some special circumstances

There are now antidotes licensed to at least one of the NOACs and more on the way

Why is Rivaroxoban banned in Scotland? don't they come under NICE?

Oh and none of them "thin the blood" they anti-coagulate it, your blood density is exactly the same as before, it just doen's coagulate as easily.

Seriously mate try and switch to an EP specialist, I think your doctor has probably given you the right advice, but maybe for the wrong reasons, which worries me.

Be well

Ian

Beancounter profile image
BeancounterVolunteer in reply to Beancounter

You learn something new every day

Rivaroxaban is not licensed in Scotland

docplayer.net/2890250-Rivar...

The reason given is " The submitting company did not present a sufficient

ly robust economic analysis to gain acceptance by SMC"

Wow, firstly did not know that NICE guidelines did not cover Scotland, seems a duplication of effort to have another body, and secondly, "economic" grounds?

You live and learn

Ian

.

RobertELee profile image
RobertELee in reply to Beancounter

Very important point...Scotland has withheld a licence for that particular anticoagulant for economic reasons and it has nothing to do with safety. (Others are available) Roger - this is a British region that wanted independence just a year before the bottom fell out of its only significant income-generating industry. We will continue to prop them up of course but you can see that the SNP is clearly not the brightest LED on the Christmas tree.

Get yourself an EP fast - I'm not certain your cardiologist should be licensed.....on either side of the Tweed!

roger1952 profile image
roger1952 in reply to Beancounter

Yes I know anticoagulants are better but the cardiologist said to stay on aspirin as my stroke risk is very low and aspirin is needed because of my stent.

Roger

paulh1 profile image
paulh1 in reply to Beancounter

Hey Ian, I have stents and am on Eliquis but as you stated the reason is two fold. The anticoags are for the Afib and I'm taking Clopidogrel (antiplatlid meds)for the stents. I've been on the Clopidogrel for a little over a year and will be off of them soon.

Annekw profile image
Annekw in reply to Beancounter

Hi Scotland have their own version of Nice,in fact they had it before we had NICE!

roger1952 profile image
roger1952 in reply to Beancounter

Yes, sorry I am. I was looking at a diagram/picture of the heart at the cardiologists office, and obviously I was seeing a reverse image of the heart

Regards

Roger

joebob profile image
joebob

I found I got varying, sometimes contradictory answers from the few different cardiologists I have seen. Make a switch to an EP as soon as possible, I am now under the care of an EP and wish I switched much earlier as the difference is night and day. EP's really are the specialists when it comes AF.

SRMGrandma profile image
SRMGrandmaVolunteer

If you don't mind my chiming in here on what has already been well said by the guys, please find an EP soon and get an expert opinion. Your cardiologist's opinions are worrisome.

Buffafly profile image
Buffafly

Two Grandmas !

roger1952 profile image
roger1952 in reply to Buffafly

What do you mean by that?

Buffafly profile image
Buffafly in reply to roger1952

LOL, too cryptic, I meant I agree with the other Grandma, SRM Grandma!

roger1952 profile image
roger1952 in reply to Buffafly

Lol. Nice one

PeterWh profile image
PeterWh

My GP referred me straight to an EP so that I was seen by the arithmyia and anti coagulation specialist. If I were in your shoes I would go to your GP and ask for a referral to an EP. D I your research first as to EPs using ma in AFA website. In the long run it will be worth it. In any event you are entitled to a second opinion.

roger1952 profile image
roger1952

Yes, sorry I forgot to mention the cardiologist has referred me to an EP

Regards

Roger

roger1952 profile image
roger1952

Now I have a little more time I shall tell you the events that led up to my cardiologist appointment.

Last Friday I went to see my gp to ask why they had stopped my anticoagulant.

He went through all the medication I am on.

Apparently my steroid inhaler that I take 2 x2 daily can cause AF.

Also I use nicorette inhalers, I constantly have one in my mouth, according to the info sheet the recommended dose is 6 a day. I am using ten a day, it states that over use can cause AF.

My gp changed my copd inhaler to a non steroid one, and I haven't used the nicorette inhaler since Sunday.

When I went to see the cardiologist he did a 13 lead ecg. The results showed a normal sinus rhythm with the occasional ectopic beat. He said if it stayed like that I would have nothing to worry about. He told me to keep of the nicorette inhaler for two weeks when I am to see him again.

So it's fingers crossed for me for the next two weeks 😇

I am to see him first for the echo cardiogram and another ecg, then I have to see the EP the same day.

Roger

lingooz profile image
lingooz in reply to roger1952

Interesting!!! My hubby started using a ecig (vaporiser type) few months ago, then couple weeks back said he felt his heart bouncing around a couple of nights? none since (it's me who has PAF he has never experienced this before, are you saying could be a link?

Buffafly profile image
Buffafly in reply to roger1952

I would be interested to know which inhaler you were on? I always thought that some of the asthma/copd meds I was prescribed made my heart problems worse.

roger1952 profile image
roger1952 in reply to Buffafly

Hi, the inhaler I was on was sirdupla. (Fluticasone+Salmeterol.)

But apparently all steroid based inhalers can have this effect

Regards

Roger

jennydog profile image
jennydog

I was prescribed daily aspirin when AF first struck. It did not worry me as I had always used it for headaches. However, daily aspirin upset my stomach very badly.

I take dabigatran now and there is an antidote.

Kodaska profile image
Kodaska

Your doctor may not be up-to-date on anticoagulant antidotes.

pmlive.com/pharma_news/nove...

professionalsblog.clotconne...

ncbi.nlm.nih.gov/pubmed/254...

MarkS profile image
MarkS

I'm afraid that there is a lot of medical advice being given out on this topic which might not be 100% accurate. The key point that has been missed is that Roger has a stent.

The situation of a patient requiring an OAC and who has a stent is not straightforward. See:

medscape.com/viewarticle/72...

One of the recommendations is for doctors to tailor antithrombotic therapy according to the patient's risk profile.

So it is correct for the doctor to assess Roger's risk of stroke (2.1%), presumably using the CHADS2VASC system. Having done that, if he assesses Roger's risk of a stroke as relatively low, he may indeed have made the right decision.

Mark

BobD profile image
BobDVolunteer in reply to MarkS

I think I pointed out that aspirin was needed for the stent right at the beginning. Regarding stopping bleeding in emergency with warfarin, at HRC this year Matt Fay and Dr Gupta were discussing this subject and made the comment that it wasn't always that easy. The drug you mentioned has to be requested and brought up from the dispensary and as in all hospital situations this may well take time, hence my comment that it was not always immediate.

Subsequent posts from Roger , however, have changed the whole aspect of the question and correct (if there ever is one ) answer.

roger1952 profile image
roger1952 in reply to MarkS

Thank you Mark. ☺

Roger

Mike11 profile image
Mike11

When you see your EP, firstly ask him to get you on an anti-coagulant AND and anti-platelet, or explain why not.

I also have the platelet syndrome I suspect you have (lots of red blotches and bruise easily) but I'm still on both post a successful ablation.

For the anti-platelet, ask for clopidogrel - it's far safer than aspirin. For the anti-coagulant good old warfarin is actually the best proven one so give it a try.

countrygirl1 profile image
countrygirl1

I'm afraid the information about Scotland is not accurate. We live in Scotland, and my husband has been on Rivaroxaban for 3 years now after his GP suggested it would be better for him than Warfarin. I have just started on Apixaban at the suggestion of a cardiologist although my GP was prepared to offer Rivaroxaban. I know several other people here also on Rivaroxaban.

angell1950 profile image
angell1950

I recently had a TIA stroke and during the tests I was diagnosed with A Fib : I was prescribed apixaban as an anti coagulant: but prior to this I was taking juices with a nutrition bullet and adding a supplement from Holland & Barrett which had hemp in mix: this is a natural anti coagulant: maybe this will help

Musetta profile image
Musetta

Hi Roger,

Sorry to read about your health & NOACs problems. It's excellent you're able to

see an EP who'll hopefully be able to sort the wheat from the chaff so to speak. I'm sure all here on the forum will look forward to what he/she has to say. There must be other AF sufferers who for medical reasons are unable to take NOAC's - perhaps we

we could hear from them. Meanwhile, mate, all the very best and be of good cheer.

Musetta

Very interested in Rivaroxiban being banned in Scotland- it gave me bad diaorrhea (apparently a known common side effect!) so they gave me apixaban instead but I got bruises and the odd nose bleed which freeked me out so I stopped taking them- I weigh just over the 60kg that is the cut off point for taking half the dose! I was told I had a 2.2% chance of having a stroke but I pointed out that meant I had a 97.8% chance of not having one and I like to be positive! I now see that your post is 3 years old so hope you are doing well on whatever you are/aren't on!

roger1952 profile image
roger1952 in reply to

Hi Sandibee

Thanks for your reply.

They took me of it for a while, then discovered I have AF so I'm back on it again

Roget

I have AF too but it is only paroxysmal which means it happens at most once a week and only for an hour or so as I take a flecainide 50mg pill so I don't really think my blood would get anywhere near curdling in that time! Of course I may be proved wrong - how weird- I didn't change the font but it has gone into italics!

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