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Kbuck1234 profile image
45 Replies

What are the risks with taking these new anticoagulants? Is it just a bleed risk ie not clotting or do these drugs increase the risk of bleeding itself?

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Kbuck1234
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45 Replies

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PeterWh profile image
PeterWh

Certainly Apixaban is lower bleed risk than warfarin. I think some of the other NOACs are as well. Also with some of the NOACs a lower dose can be given if your bleed risk is slightly higher than normal.

Suggest that you do some research (including main AFA site), speak to your pharmacist so that you can have a more informed discussion with your GP / EP / cardiologist.

Finvola profile image
Finvola

When I was prescribed Apixaban 3 years ago, my cardiologist said it was his preferred AC as it had the lowest bleed factor.

I would imagine the risks of NOAC's are the same as with Warfarin - increased clotting time. Reversal agents are bit of a red herring, I think, as any serious bleed will be exactly that and will be treated with emergency procedures.

It is worth considering other factors - relative newness and therefore shortage of data for long term use.

At the end of the day, I trust my expert cardiologist and take the tabs - best wishes.

Sorry to bombard you with videos, but probably this one is very relevant to the risks with NOACS especially compared to Warfarin.

youtube.com/watch?v=GcEazO_...

Dr Gupta also calls them Blood Thinners, which I do not understand. Everyone and his uncle, including the NHS, explain how they do not thin the blood. But Dr Gupta appears to disagree...confused!!!

Koll

dedeottie profile image
dedeottie in reply to

In a different video he does actually correct himself and say he is going to call them anticoagulants in future.

I think he must have reading Bobs posts!

Goldfish_ profile image
Goldfish_

Page 7 of the uk NICE guidance lays out the differences nicely

nice.org.uk/guidance/cg180/...

I think most of us using this site are taking an anticoagulant.

Rellim296 profile image
Rellim296

There are risks in taking an anticoagulant and there are risks in not taking one. You can assess your risks of having a stroke but when it comes to bleeding, you need a crystal ball.

If you get on a tram at 6am, how likely is it to come off the rails? Were any of the unfortunate people who died yesterday in Croydon taking an anticoagulant?

Life is full of risk but ordinary people carry on, with the feeling that their lives stretch out in front of them. Those of us on an anticoagulant can do the same. Alternatively we can worry and feel vulnerable or we can be convinced that we haven't much time left and make the most of every day. It's a question of attitude.

BobD profile image
BobDVolunteer in reply toRellim296

Totally agree with that Rellim. We all have different levels of risk acceptance. some much more the others who sadly also usually exhibit serious anxiety traits. What is important is to understand the real rather than theoretical risks in everything that we do. For that knowledge is everything.

Vony profile image
Vony in reply toBobD

I think you are simplifying anxiety disorders Bob. They are very serious and often debilitating disorders and are much more complex than people 'having different levels of risk acceptance' and others who 'sadly usually exhibit serious anxiety traits'. Anxiety is often not a trait but a disorder that leads to serious illness. I am sure you mean well so am not being critical. But you must understand that many many people who suffer from anxiety disorders cope extremely well with real problems...people who have had transplants for example. Anxiety and worry can be a very real and different problem than simply having a low threshold to risk tolerance. There is an old saying (I know you love mantras) 'never give someone with anxiety 2 weeks' notice and they will cope with anything!

BobD profile image
BobDVolunteer in reply toVony

I do fully understand anxiety believe me Vony. What I was thinking was that for some people, low risk acceptance often goes with anxiety.or maybe it is the other way round but they often present together. We read here a lot how people fear the idea of ablation (low risk acceptance) yet these people say how they suffer from anxiety. I really am not trying to simplify what I know is a very complex problem and of course whenever one tries to generalise it is bound to go wrong. Never intended to cause offence.

People also often talk about being anxious when what they really mean is that they are a bit worried about something much in the same way that people say how depressed they are when they are just a bit fed up. Real depression is a serious problem as I have seen with close relatives. English is a wonderful language but often too many generalised terms.

Vony profile image
Vony in reply toBobD

I think you maybe did mean worry and difficulties with acceptance Bob. Anxiety certainly is a spectrum and being anxious about procedures like ablation can certainly be normalised. Worry and anxiety serve some purpose. I think though that to generalise anxiety as a low tolerance to acceptance of risk is a little naive but you have explained that this is not what you meant. It is important not to make people who have normal, understandable concerns feel weak and also not to make those who suffer from anxiety feel stigmatised. It is also much easier for you, who had an ablation many years ago, to talk freely about it without the raw fear. I can also talk about mine 2 years on without that raw fear. But it is completely normal to feel fear when one hasn't been through it before..or come out the other side successfully as you did. Thank you for your response:)

CDreamer profile image
CDreamer

When you say the risks of these 'new' anticoagulants I am not sure what information you want? As against Wafarin?- as I understand less risk of brain bleed - As against taking nothing? - higher risk of having a stroke.

I have taken Dabigatran -2013-2014 and now on Apixaban. The risks of not taking an anticoagulant must be wayed up against the increased risks of bleeds.

I had stomach problems with Dabigatran but I mangaged that easily and have had absolutely no side effects with Apixaban but some people have suffered some side effects from different NOACS.

Everyone is different and reacts differently to all drugs and unfortunately, we don't know until we take them how they will affect us.

ILowe profile image
ILowe

Warfarin is obligatory for anyone with an artificial heart valve, because it gives better protection ie it has more than one mechanism of action, and some of these others relate to problems specific to the valve. If you do not have that (as many do -- artificial valves, especially the mitral one, predispose to AF) then I leave you to discuss your options with others. Personally, after over 23 years of Warfarin, I actually like it, and would choose it even if they offered me a NOAC. It is certainly a lot cheaper, even with the testing.

seasider18 profile image
seasider18 in reply toILowe

I get cardiologists telling me that I can take NOACs with my tissue aortic valve. I tell them that I have written to all of the NOAC makers and they all confirm that they are contra indicated.

The Cardiology Gods all say that they can over rule the makers and that they are safe. I ask if that is why the trials were stopped.

Mrspat profile image
Mrspat in reply toseasider18

I have a tissue aortic valve and have chosen to take an NOAC on cardiologist advice. The definition of non-valvular AF is far from straightforward.

BTW ILowe, not everyone with an artificial heart valve needs anticoagulation. Those with a tissue valve as opposed to a mechanical valve do not automatically need it. It depends whether AF or other risk factors are also present.

seasider18 profile image
seasider18 in reply toMrspat

I did not have AF prior to getting the tissue valve. The procedure put me into it as it does for about a third of patients. First cardioversion in hospital did not work but one three months later put me back into NSR. Surgeon said aspirin was then enough and cardiologist asked if I wanted to die.

I stayed in NSR for 15 months until a colonoscopy stimulated my vagus nerve and put me back into AF. Back in NSR until a urologist again stimulated my vagus nerve. Now I'm in permanent AF but seldom notice it,

The best explanation of arrhythmias I have heard was from a vet when a horse we had a share in developed one. As you say the definition is far from straighforward

ILowe profile image
ILowe in reply toMrspat

I took artificial heart valve to exclude tissue. I will be careful to be more precise next time. Thanks.

Mrspat profile image
Mrspat in reply toILowe

Someone has posted a link to a big research article. I have only looked at some of the bits that interest me. There is a section about valvular and non valvular AF which makes the point that there are several sub categories within these terms e.g. which valve is involved and whether the replacement is mechanical or tissue.

ILowe profile image
ILowe in reply toseasider18

Interesting comment seasider18. It is in the interests of the companies making NOACS to have as many as possible using them, and even they think they are contraindicated for tissue valves. I wonder why? Are they afraid of being sued? (I think not, bills for being sued are part of the system, and drug companies do not seem put off by that). Or is it they actually know something? You do well to ask awkward questions.

To me, when someone, against their normal interests, says something, then it becomes even more important.

I have no choice - a metallic heart valve. But I actually like Warfarin, and if given a free choice I would take warfarin. Not everyone though has it as easy as I do. It is clearly documented that warfarin has extra mechanisms of protection.

seasider18 profile image
seasider18 in reply toILowe

Everyone apart from the manufacturers say that I can take them. The NOACs scare me even more than Warfarin.

My request to get on the Amplatzer Amulet trial at the Royal Sussex did not succeed as the trial has now finished. One of the doctors doing it has offered to see me privately at his clinic! My GP's request for an NHS appointment with him seems to be lost in their system as even PALS could not trace it.

medpagetoday.com/meetingcov...

dotmed.com/news/story/33877

One of the practice nurse at my GP's said that the Royal Sussex is the worst for paperwork. She recently had a letter from them telling her the preparation she needed for an MRI scan that she had three months ago.

Royal Sussex is now in special measures and to be run by Western Sussex Hospitals NHS Foundation Trust

bbc.co.uk/news/uk-england-s...

ILowe profile image
ILowe in reply toseasider18

To my mind, if the NOACs scare you, they should let you go on Warfarin. Afterall, that is cheaper, and well known. Usually people complain they want NOACS and are blocked! If you go the private route, Warfarin is really cheap. Get a private prescription, shop around and buy it in tubs of 500 for about 10 pounds each.

seasider18 profile image
seasider18 in reply toILowe

I am on Warfarin again but I don't like it. My GP does not like me on it either. Age, high BP, stomach ulcer history and side effects. I have twice stopped it for long periods. I went back to it again in February( after being off it from June 2014) at the time I applied to get on the Amplatzer trial and considering ablation or AV node ablation.

ILowe profile image
ILowe in reply toseasider18

I leave it to others therefore to comment on NOACS. At least nowadays we have some choice. 23 years ago it was Warfarin or nothing. But, there are some other anticoagulants. You could ask to try Sinthrome. Many people in UK have not heard of it, but it is there in the National Formulary I have. The French love it! The problem with it is that it has a shorter half life, which means it is fractionally harder to keep stable. But, you might find you tolerate it. So, it is like Warfarin, you still need to do regular blood tests.

seasider18 profile image
seasider18 in reply toILowe

An out of hours doctor suggested Sinthrome. The INR nurses at the practice had not heard of it. My GP said that it is very seldom prescribed . Several cardiologists had not heard of it. I happened to meet the arrhythmia nurse while waiting at the hospital. She said it is not prescribed because we know a lot more about Warfarin.

Rellim296 profile image
Rellim296 in reply toseasider18

What is actually scary about the NOACs, seasider?

Two years ago I wrote the following:

I'm scared that warfarin will do me in so I'm even more scared of the NOACs! My other half has been trying to persuade me that he could cope competently with any superficial injuries and control bleeding. But I feel I'd just wrap myself (metaphorically) in cotton wool and be housebound.

I swapped to Rivaroxaban about 18 months ago and to my surprise I'm entirely at ease with it and much happier than I was on warfarin. I have not had any worries of any sort, nor any problems. Do I stay at home? No!

I think we are always unsettled by new medication, but I don't think the lack of antidote is an issue at all and in over 3 years of anticoagulation, I haven't had any sort of problems with haemorrhage.

seasider18 profile image
seasider18 in reply toRellim296

As I said it is contraindicated for those with mechanical or tissue valves. I read even on this site of people changing NOACS to get one without side effects.

I read and hear from others of blood in stools and urine. Bleeding gums and eyes, stomach pains and many other things. A friends brother had a massive stomach bleed but was also taking Nsaids that week. He has also just had an operation on his hand cancelled as his stent is partially blocked. Should that happen when on a NOAC? He now has to have his stent replaced before he can have his operation.

Warfarin as I said to Peter gets more dangerous with age and I’m 82 and have a few others factors against me. My GP’s father is in his 90’s and has AF, hypertension, a pacemaker and regular TIA’s. I’m not sure about a heart valve, I must ask if he is on warfarin or a NOAC.

Rellim296 profile image
Rellim296 in reply toseasider18

Yes, some people do have side effects with NOACs and struggle to find one that suits. I'm lucky that I have had no difficulties, although I found the prospect of anticoagulation very disturbing when it was first suggested that I needed it and was unhappy about it for a while.

seasider18 profile image
seasider18 in reply toRellim296

Problem with Warfarin is that any change of medication or new med affects my INR.

I asked the nurse what I could do with my diet to reduce my warfarin dosage. She said practically nothing as it is you metabolism that rules how you system deals with it. She has one normal sized man who gets by on 1mg a day and a lady who is on 1/2 mg a day and some on 12-15mg.

If warfarin is dictated by our metabolism why not NOACs or is it that there is no way of finding out.

Rellim296 profile image
Rellim296 in reply toseasider18

Yes, INR can vary a lot. NOACs work in a different way and are not influenced like warfarin is by all sorts of things. As you say, Warfarin is very personal. I think one is perhaps better off on a high dose as minor adjustments are easily made. If you are on 14mgs a week, 1mg extra is a much bigger jump than if you are on 9mgs a day and go from 63mgs in the week to 64mgs.

seasider18 profile image
seasider18 in reply toRellim296

As my INR had been stable my testing times had been extended but it had gone from 2.5 to 3.6 since the previous test eight weeks before. There is no way of knowing how long it had been high. I thought it must have gone up as cut finger two weeks ago would not stop bleeding but the triage nurse and doctor at A&E only asked what my last INR had been.

Last week the INR nurse only reduced my dosage from 8 to 7.5mg. and this week to 7.3 with my INR at 3.2. I said be brave and ignore the chart and reduce it to 6mg. She said that she had to balance the odds between me having a bleed or a stroke. Rather like the choice between the guillotine or hanging.

Rellim296 profile image
Rellim296 in reply toseasider18

Absolutely! It's like walking a tightrope. I wasn't comfortable with tests more than a month apart as, just like you, on one occasion my INR could have been well over for five or six weeks. If you have a Coaguchek you can always check yourself.

ILowe profile image
ILowe in reply toRellim296

I have successfully experimented with breaking tablets into four. When I was on Amiodarone, I found I was stable on 3.75mg ie 1x3mg and one 3mg tablet broken in four. I have never seen it anywhere in the textbooks. I always thought 0.25mg was smaller than minor changes in diet (did I have a salad tonight or not, sort of level). I was wrong. For a while I was stable on 5.25mg, because 5mg was too little and 5.5mg was too much, and I have a VERY unpredictable diet.

I agree though, small changes are easier to make when the mgs are higher

PeterWh profile image
PeterWh in reply toILowe

Do you mean warfarin?

Wouldn't it have been easier to have 1 x 0.5 and a 0.5 broken in half or have 3.5 one day and 4.0 the next?

ILowe profile image
ILowe in reply toPeterWh

Yes, just a matter of juggling the tablets you have to hand. Just so people know that quarter tablets work well, over several months. And MUCH better than 3.5 one day and 4.0 the next. The buffering should mean this is smoothed out, but, not so sure. I have tried both methods over the years, and am very pleased that quarter tablets and 0.25mg seems to work, and, seems to work even though I have a very varied diet, with meal times varying from 6pm to 9pm. Sometimes I have huge salads, sometimes nothing for several days. No bother. For me, the 0.25mg dosing really helped me to get stable.

Of course, not everyone will find that. But, at least this option is now on the table. Until last year I would have derided it as crazy, until I was obliged by reduced dosage due to taking Amiodarone, to try the crazy idea because the alternative was the dreaded swings.

PeterWh profile image
PeterWh in reply toILowe

ILowe - please see above.

PeterWh profile image
PeterWh in reply toseasider18

seasider18 and all.

Yes it's true that a person's metabolism has quite an effect on INR from that person to another but there are many things that do affect INR and many very considerably such as green vegetables and salads and other foods as well as other things such as alcohol, exercise, etc. The difference can be 5mg for the same individual. FYI there is a very good American publication on things that affect INR.

Incidents there are two aspects to the metabolism. One is the foods (individually) and the other thing is the absorption of the warfarin

seasider18 profile image
seasider18 in reply toPeterWh

I wonder how long the alcohol or broccoli effect lasts for.

Rellim296 profile image
Rellim296 in reply toseasider18

Actually broccoli is only moderately high in vitamin K. Kale, spring cabbage (collards) and spinach have far more. The front runner - way out in front - is parsley.

seasider18 profile image
seasider18 in reply toRellim296

The nurse is also a broccoli lover and said that it does not have the same effect as others. We have sprouts for the next few nights. Do many people eat parsley apart from in a sauce. We have a jar of dried parsley that is even older than the bottle of Angostura Bitters that I brought back from the Trinidad Duty Free shop.

Rellim296 profile image
Rellim296 in reply toseasider18

Sounds much like the back of our cupboard. You can find parsley sprinkled quite liberally over soups, salads and potatoes in restaurants. Quite a lot can (and indeed should) go into tabbouleh (couscous or bulgar wheat with finely chopped tomato, cucumber, herbs and oil). My mother's fish pie with parsley sauce was seriously green because we had parsley in the garden. I have used home grown garden herbs less in recent years - in fact not at all - because we had two cats and a feral cat who had territorial disputes. I'll say no more. But a sprinkling of parsley has a significant amount of vitamin K in it. I can't remember the measure/weight but broccoli scored about 400, spinach 800, kale 1000 and parsley 2000+.

Sorry, Kbuck1234 - we have departed from the topic.

ILowe profile image
ILowe in reply toseasider18

British know more about Warfarin. Agreed. But in terms of worldwide knowledge, it is well known. The major difference seems to be the half life. But, if you are stuck for choices, then an available one that is cheap is worth considering. It just may be that you can tolerate it when you had problems with Warfarin.

I was on it for a few years. The only difference I noticed was that it seemed harder to stay stable for the INR. Only recently I found out why -- the shorter half life. The lack of experience of it in UK should not stop them letting you try it. Afterall, it is almost like Warfarin. The same guidance applies.

seasider18 profile image
seasider18 in reply toILowe

Were you taking Sinthrome in the UK?

ILowe profile image
ILowe in reply toseasider18

No, I had a temporary job abroad and switched, but the British Doctors had no problems with it: I was given total free choice. Because slight differences between supposedly equivalent meds can sometimes make a whole difference to what an individual can cope with, and given that you have tried all the other alternatives, and given that Sinthrome is an easy one, it would make sense to try it.

seasider18 profile image
seasider18 in reply toILowe

How long have you had your mechanical valve? The lady who does my annual echocardiogram said that the tissue ones are now much longer lasting and are being fitted to children. She thinks that they will last over twenty years and probably much longer.

ILowe profile image
ILowe in reply toseasider18

Since September 1993, 23 years. A relative, for a different reason, had a metallic valve nearly 30 years ago, and no signs of failure. I hope mine will last a lifetime. The warfarin is a small price to pay for that. Interesting, the tissue ones lasting longer. They need to. Having your sternum slit is no joke, though, I must say, the operation is a marvelous one. I went in, barely able to walk. I came out walking fast. I have pictures of myself, the day after the operation, sitting in a wheelchair without needing oxygen. For me, recovery was fast.

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