i have been jealously reading all the 'wonderful no side effects of anti coagulants' comments when my experience has been simply dreadful. i was diagnosed with afib several years ago but refused apixoban because of the side effects until april this year when i heard about an awful story of a stroke victim, so i decided to go for the anti-coagulant. the first was apixaban twice daily and after a few weeks of not being able to stay awake for more than a few hours - and my arms and legs turning a nasty shade of dark colours with lumps falling off, i asked to be changed. riveroxaban was ok at first but after a week i found i could only do about 400 paces before having to stop to get my breath back. previously i'd easily been up to 15 mins on a treadmill or a gym bike before i got bored. i'm now on edoxaban with anal bleeding and diarrhoea, red lumps over my arms and legs, definite brain confusion, sleeping badly at night and trouble staying awake in the day, worse - i have to pause to breathe 3 times going up my domestic staircase at home. i stopped taking them sept 13th in the hope that things might go back to normal - but they haven't.
the gp is arranging bowel investigations but i can't even think about where to go or what to do next, i feel so angry with myself for giving in and i want out, or at least back to before april - any suggestions or information on how you have dealt with this situation appreciated.
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callmemadam
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I've taken Warfarin for many years and had no problems at all. Have my own INR machine so I can check my blood levels too. Why not give that a go, it's been around for 50 plus years so has been well tested . Many people have lived to a good old age still taking it
How do you do your own Inr what happens if you use anti biotics, my husband goes to the hospital every three months unless he has anti biotics. Then he has has to go every two or three weeks.
I bought a machine to measure my INR (like they use at Dr;s Surgery), they're made by Accucheck and you can find them online. Think they cost about £300 now. I bought mine second hand from someone on this forum who hadn't had it that long before deciding to use one of the newer anticoagulants, Yes, you need to measure more often if on antibiotics. There's never been any restriction on prescriptions for the lancets and strips that my Dr prescribes. It took me ages to realise it wasn't easy to do if my hands were cold. I generally come over hot a short while after having a shower and that's the best time for me to chck it.
My INR was never consistent when I went for a check up at my doctors surgery. I was almost having to go every 2-4 weeks. Now I'm more in charge it's far more consistent. I report my results back via email to DRs every 6 to 8 weeks.
I had the same problems and cannot tolerate the new anticoagulants. I was sick for a long time trying them all. In the end l asked if l could try Warfarin, which l did and found that it was much better to cope with. I have INR check every few weeks and eat everything in moderation and dose my Warfarin accordingly. We are told not to eat too much Vit K as this interacts with the Warfarin but eating some helps to stabalise the readings. I eat normally. Consistency is the key.
I have taken all of the anticoagulants including warfarin and cannot tolerate any of them. For me, Warfarin was the worst because I struggled to stay in range. In the end I wrote out 7 days meals and stuck to this every week. Boring!!! Still I kept going out of range.
There is one that you haven't tried and that is Dabigatran. The usual dose for this is 150mg twice a day. I couldn’t tolerate this.
As I was at the end of the road with anticoagulants, I was put on a lower dose of Dabigatran, 110mg twice a day. I have tolerated this. Better a lower dose than none at all.
"i was diagnosed with afib several years ago but refused apixoban because of the side effects until april this year when i heard about an awful story of a stroke victim..."
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That's not how you make a decision on whether or not to take thinners. Yes, there are stroke victims, but there are also those brain bleeds from thinners. Ancedotals about strokes, often posted here, do more to scare people into a decision rather than educate them.
The decision should be a shared one with a trusted doctor using not only the CHADS risk score, but other factors, including your tolerance to the drug.
The increased incidence of stroke for those with AF can be up to 20% (US statistics in one study) and accounts for 10% to 12% of all ischaemic strokes.
On the other hand, brain bleeds are NOT a 'side effect' of apixaban of itself and what figures there are are in connection with head trauma in accidents etc, which seem to be about 7% or so more likely if you are on any form of anticoagulant.
In the end we have to evaluate ourselves the effects and the relative risks. And as with many drugs, reactions and side effects can alleviate considerably after the initial effects. Nobody should give up in the first couple of weeks and discuss with their doctors the likelihood of side effects diminishing in a reasonable time span.
I recognise many of the things mentioned in this thread, such as anal bleeding, stomach upset and feeling breathless, but these were all for me effects in the first months of taking apixaban and soon were alleviated. I now don't know if my breathlessness is just from the permanent AF or possibly still a side effect of my blood being thinner.
"brain bleeds are NOT a 'side effect' of apixaban of itself " ... maybe not, but ...
The issue for me is that I did have unexplained chronic bilateral subdural haematomas in late 2016, and was lucky to get myself to A&E after I noticed intermittent left hand paralysis. The imaging of the extensive pools of blood across my brain was truly frightening, but as the bleeds had stopped by the time I reached A&E, the treatment was conservative and thankfully no surgery required.
My fear is that if I have another such bleed while living alone at home (as I do), then if I am anticoagulated, the bleed may well be catastrophic (as research warns) before I am able to call for help.
So, in the light of this history, I was then surprised that I was recommended Apixaban, although I haven't started this medication yet by choice.
It would be more than helpful if I had been able to discuss my anticoagulation recommendation and fears with a cardiologist or haematologist, but this decision was taken "off camera" without my "informed consent". Decisions about me have been relayed by an arrhythmia nurse in cardiology and a pharmacy nurse in haematology, not by any face-to face conversations with the decision takers.
So I'm not happy about this situation and still confused about the best way forward for me re anticoagulation.
But as you said it's an individual decision (if only I felt informed), and never routine.
You need to do some fist banging on the table! You really need to have an in-depth discussion with a medic who looks into your medical history. In no way would l begin taking an anticoagulant until l had some answers as to my safety. You have a right to make your own decisions and must insist on speaking to someone. An awful dilemma for you, especially living on your own. I hope you get some advice very soon to put your mind at rest.
When I mentioned this previously on the Forum, one member said more complicated decisions (like mine?) are taken by multidisciplinary teams (MDTs), so a meeting for me with all the involved specialists (cardiology, neurology and haematology) would be impossible. But as you say, meeting just one would be progress. And moreso since someone on the Forum helpfully suggested that I might be able to effectively take a half dose rather than the full dose, as others sometimes do for different reasons. But that would obviously need a new referral to a specialist. Ugh!
But if none of these medical specialists thought I needed a face-to face "presentation of the 'facts'" re anticoagulation, I do wonder the basis of that decision. Is it actually a result of the current lack of NHS resources and the associated expedited efforts to clear waiting lists asap? Possibly.
I am currently trying to learn as much as I can from the experience of others on the Forum and by reading relevant anticoagulant research re brain bleeds.
I do wish you well, You have a right to ask questions regarding your life. There are necessary things to discuss and what are the alternatives for you?There are others who have blood disorders eg. Haemophiliacs etc., so what is the treatment for them? l would go back to my GP and say this isn’t clear and you need more reassurance than 3 people deciding your future without you being able to clarify your concerns. Don’t be fobbed off and stand your ground. Out of the three l would go to my Cardiologist and have a face to face. This is really terrible lack of care and a terrible worry for you. Let us know how you get on.
Unfortunately, here in London, I was "signed off" from Cardiology after my single meeting with the Arrhythmia Nurse (with no Cardiologist in sight, certainly none I could refer to as "mine").
For me, it's back to my GP for a new referral if I want to "kick off". 🤔
Yes, good idea. Go back to your GP and get this thingy sorted out. You need a Cardiologist with your existing health problems. I don’t understand why you have only seen an Arrhythmia Nurse. The first port of call is a Cardiologist. All of us with AF have one. Have you had the appropriate heart tests? Echogram etc.? AF doesn’t go away and can rear it’s ugly head at anytime, even in your sleep. There is no cure but it can be treated and is not life threatening. Anticoagulant treatment is the most important, You really need to go see your GP now. He can put in an urgent referral for you. You must get some help to manage your situation ok? This is not good enough. Take care.
I did have an appointment with cardiology, but because there weren't any "plumbing" problems detected in my echocardiogram, I was shunted sideways to the Arrhythmia Nurse. Standard practice at this London Hospital apparently. She did a good job, trying to explain, but details got lost by me in the "anxiety" of the appointment. She even asked if I wanted to see an EP, but at that stage I didn't want to occupy an EP with my "trivial" simple pAF. DOH! I'd like to see one now!
Replying just now to oscarfox49 I remembered the recent good news with the trials of Factor XI Inhibitors and their much lower bleed risks. I am certainly following that. You might be interested ...
Thanks Bob for the link. Go get a referral back. You need to talk this through and get the appropriate treatment for you. We are all unique and need to be examined (some of us in the head 😂). so that you get the treatment you need to stay well. With all your other problems with mobility it can get somewhat overwhelming. I have osteoporosis in my legs so know the difficulties that life can throw at you. Don’t neglect yourself on this one, you deserve better treatment ok?
My comment was based on the research that apixaban is claimed to be far safer than warfarin and possibly some of the others, and the research that showed actual bleeds in the brain were the result of trauma. I am sure there will always be cases where other arterial and circulatory problems could make this more likely if using any kind of blood thinner, or even diets high in Vitamin K and so on.
I agree with you that it is vital to be fully informed and I remember when I was first prescribed Apixaban after my stroke, I was terrified just to be handed a leaflet which gave warnings of dire consequences without any counselling or explanations of just what the dangers actually were! In that particular predicament, of course I had no choice but to take it at the dose given, but what I have learnt since has come from groups like this one and general reading on what is on the Internet.
I can see exactly why you now are concerned given your history of such bleeds and the lack of reassurance and explanations of risk is clearly not acceptable I hope you are able to resolve the issue very soon and get the best possible treatments for your particular situation. We are all different of course.. My greatest fear of course is of another ischaemic stroke, but your circumstances are very different..
You might have to join Medscape to read the article, but it's free, and I've had no unwanted contact after joining.
Hello callmemadam, sorry to hear that you are having such a dilemma regarding anticoagulants. Whilst most of us who tend to settle to the medication offered, there will always be folk who unfortunately will experience some difficulty before an effective solution will be found. As has been said, there are a number of options available, even a procedure referred to as a Watchman or LAAO procedure which whilst not easily accessible on the NHS, it can be offered where there is a higher stroke risk than the norm and all types of medication based anticoagulants have been deemed as being unsuitable.
Assuming you are in the UK and seeking treatment by the NHS, you will know and understand that it might be a challenge to get a speedy solution to your problem and given the various symptoms and side effects you have described, it’s important that you follow through with the investigations which have been recommended.
Here in the UK, stroke risk are assessed using the CHADsVASC scoring system and the risk of bleeding is assessed by using the HASBLED scoring system. Both follow a similar format and both are worth Googling if you want to know more. None of this is a precise science, but if your HASBLED score is low and there is no history of you, or close family member suffering from an internal bleed, if your CHADsVASC score is 2 or more, it is assumed that your stroke risk is higher than a bleed and you will almost certainly be prescribed an anticoagulant.
First I should point out that I’m not medically trained so anything I suggest or say must be discussed with your Doctor. Anticoagulants in themselves tend not to cause spontaneous bleeds. Bleeds occur as a result of trauma, weak or damaged blood vessels, high blood pressure or from other external source. However, once a bleed occurs, any anticoagulant will exacerbate the bleed and could make it more difficult to stem. I can therefore understand why your Doctor is keen to check the situation regarding your legs and bowel because it is impossible to establish the reasons for what has happened since you have been taking anticoagulants. As you probably know know, bruising is the result of internal bleeding and although I’m not sure what exactly you mean by “lumps falling off” your legs, this needs to be investigated.
I’m sorry if this sounds alarmist but anticoagulants have been known to help identify issues much quicker than otherwise might be the case which have significantly improved patient outcomes. I’m also sorry that this is a lengthy response to your situation but it is important to understand that there are many people here who are willing to help you. I would also suggest you consider contacting the AF Association help desk via their website as I know they will be happy to assist you further. Hope this helps…….
My cardiologist told me I have to be on anticoagulants for 6 weeks before any procedure so if you can’t take them you can’t get any procedure done at all. He was adamant this was the case just saying yeah
Absolutely, assuming you are talking about a cardioversion or an ablation, they need to be absolutely sure that there are no blood clots lurking because they could be dislodged during the procedure and cause a stroke. Similarly, a Trans-oesophageal echocardiogram (TOE) which is a camera is passed down the throat to seek out any unwanted clots…..
I've been taking Warfarin for nearly 14 years. 65 when started, now 79 ... no problems at all ... I've even had to have three surgical procedures where I've had to stop Warfarin and restart after, the most challenging being knee replacement surgery. No sweat.
I started with my surgery INR clinic doing all my INR testing but because I worked shift work and found these clinic visits a pain I bought my own testing device and working closely with my surgery INR Nurse ( for future doses and testing dates) and reporting in my INR test results, absolutely no sweat.
From the beginning I've paid scant regard to diet or booze with Warfarin but what I've done is everything in moderation and done it consistently, consistently, and still more consistently. I lead a totally normal life.
My GP has tried to get me to agree to switch to these newer anticoagulants and I've refused point blank ..... if it ain't broke don't fix it !! End Of !! No brain bleeds ... plenty of bruising if I've been careless doing DIY tasks around the home and of course if I've gashed myself the bleeding is slower to stop - even so it does. I still keep a first aid kit in my car when travelling and also in my work bag.
All that jazzy stuff said ........ the longer these newer anticoagulants are used by the medical teams around the country the more we find out that they do have weird side effects on many peeps, some not identified in the early drug trials or published on the bit of paper in the packet. Equally, Warfarin does too for many peeps and for them the newer anticoagulants are a blessing.
There is an ongoing trial called REACT-AF, in which subjects are given an Apple Watch for monitoring AF if they have paroxysmal (not continuous) AF. The idea is to see if having patients take anticoagulation only when they have an AF episode lasting hours, then stopping, will give similar mortality results to continued anticoagulation.
Anticoagulation, although now convenient compared with the old warfarin, still has risk of bleeding into the brain which is catastrophic.
We're hoping that my wife can fall into this group that occasionally has AF and we can stop the Eliquis if she does not have recurrence, or has it only occasionally. This is NOT currently standard practice, but the science behind this trial is very sound.
Thank you. I just wonder how they select their control group of subjects - specifically how they deal with patients who have paroxysmal AF and are symptomatic at times.
ACs can cause bleed problems and do not provide complete protection.
A good medic will look at your CHADAS & HASBLED, review your experience to date, take into account your personal feelings and advise. However he/she can't take that decision for you!
An Alternative Practitioner might suggest Nattokinaise and others not as a complete substitute but a help to avoiding a stroke. They do say don't take Natto if you are on ACs so it must have some benefit.
I was marginal for taking ACs and evaluating my body's perceived weaknesses in the stomach and bowel, my active hobbies sometimes banging my head and my remission from AF episodes, I decided not to start ACs and am still here 10 years later. Of course, I could have a stroke today, I am not complacent, I take Krill oil daily, plenty of water and exercise and as I have just passed 70yo I am looking at starting Nattokinaise as my next step.
I would add I see my cardiologist annually and he accepts my stance 🙌.
On being diagnosed with AF, I was trialled on apixaban, then edoxaban, and finally rivaroxaban. All three produced unacceptable side effects so I was switched to the old fashion warfarin.....
It is a bit of a pain having to get monthly INR checks, but it does work for me. Like many others, I'm thinking of investing in my own testing machine.
My late mother-in-law was on warfarin for donkey's years, and it kept her going till she was 95!
My problem too! Just lying here now wondering where to go next, have tried them all. I wasn't able to visit my brother while he was dying and will be unable to go to his funeral unless I leave off the meds... and I've already had a nasty stroke..... but yet again a neighbour had a stroke while she's taking Xarelto. My cardiologist told me 'some people just get strokes, Xarelto, Eliquis (apixaban) makes no difference' And told me to continue with Xarelto. I paid him £200 for that. But my life has come to a full stop... too ill to go anywhere, do anything.Yesterday I had pre-stroke symptoms.... so will hawthorn, loads of ginger, garlic, beet juice, etc., help me. And will going back on the anticoagulants do more than just make me ill? There are no guarantees.
I sympathize and understand. Social life -0. I tried to go to a friend's memorial lunch, had to leave before the meal as felt so wretched. Please feedback all side effects to professionals, may go towards improving things in the future.
I have AF diagnosed 6 months ago, the Peroxsismal type (spelling), i am on Apixaban now, and afetr reading all the above from everyone, have decided we all have to do what we find is best for us, i.e. thre are side effects of any meds. I weigh it up as, the risk of Stroke mainly from AF is higher than I like to accep, without taking anticoagulants as opposed to taking them. Yes, i could put these down to my bit of stomach upsets now and then or bit headachy on occasions, even the breathlessness worse some days, but i try and reign in my thoughts.... realise that i may be blaming them for things that would be there anyway at my age of 76, all i know for myself anyway, i am happier to be trying to lower the risk of strokes than to not be taking apixaban. BUT all i will say is if you or anyone ahs any problems, do not just stop taking meds. always see your GP, do not listen to other peoples experiences as such, one size does not fit all. Good Luck, speak to your GP.
It’s great that your anticoagulants are not causing you big problems but Callmemadam post was requesting advice on moving forward with such adverse side effects from these drugs. She’s clever and not stupid she says she read all posts on how people do well on them but sadly she’s suffering badly and has no quality of life at present unlike others on here raving how great they are There’s only 2 replies with good advice. Age is just a number my 91 year old neighbour hikes 9 miles each morning she’s amazing.
It sounds as if you need some kind of specialised blood test to determine why you are reacting in this way and if there’s a way around it (e.g. by taking warfarin, for example). The modern anticoagulant drugs (DOACSs) all work similarly, so far as I know , by affecting a particular aspect of the blood so it might be that you are somehow genetically slightly different from the majority of people in that respect. A friend has a lower level of a particular liver enzyme, for example, and this is always taken into account when he is prescribed medicines.
One size never quite fits all where medicine is concerned.
The current state of the NHS definitely requires some banging on desks to get attention and things done, or - sadly - digging into our pockets to pay for private tests and treatment.
You are not alone in this, I also suffered awful side effects and still I continued after pressure from Drs to continue. Finally tried warfarin which put me in A&E Double up with stomach pain which was relentless, after which I told the Clininic and my Dr I had decided to stop as I had no quality of life on any of the anticoagulants. I’m still suffering with stomach pain since stopping and lost a stone in weight. No support for us who want to take anticoagulants but are not able to tolerate them, I have been told by warfarin Clininic that my problem is anxiety- what a joke as I wasn’t anxious in fact I was eager to take something that was going to protect me. And on here right at the start of my afib journey a certain someone accused me of being a “anti everything‘ just because I came on to ask a question about anticoagulants! I’m taking control of my own health now and studying how to heal The body through natural health and things are Slowly starting to improve. I wish you well God bless x
I can relate 100%. A strong(or was) independent lady, no drama queen. Sometimes feel that some think that I am overreacting/ not believed. Feeling like I am 150 years old no constructive advice from arrhythmia clinic (it's up to me) or GP. Who has now prescribed Asprin. ( yes. I know the pitfalls). Currently spending hours doing own research on Genetic testing, something ,GP should IMO be doing. (Slow drug metabolism can increase side effects, but drugs may be adjusted to allow so I have read). Wishing you well
Madam, I'm sorry you've had so much suffering. You are not alone in needing some other option to the standard anticoagulants. Many, like me, have bleeding diseases or other issues that make it impossible to take even the newer anticoagulants. Lately, I have seen the research articles of Dr. Robert Jay Rowen and acupuncturist Dr. Dan Kenner on proteolytic enzymes, ie., "Enzymes, Stunning Safe Supplements", Kenner Rowen Report, Aug. 8, 2023. He reports on results of clinical trials and research studies--there's another article on nattokinase and lumbrokinase that interested me. You can subscribe for free by searching his name. Rowen and his wife are MD's who began researching alternative options for many diseases 30 years ago, when standard treatments weren't working for their patients, and he also reports their many experiences with patients. Might be something of interest to you there. Best wishes for healing!
Poor you! Your experience certainly trumps mine! The Rivaroxyban caused diarrhoea with me and Apixaban came with constipation so that my stomach hadn’t emptied 5 hours after last eating (discovered when I had an endoscopy and the hiatus hernia was found). Since I’ve been on flecainide ( 100mg twice daily) I don’t have episodes of AF except the very occasional very short one so just have to accept the side effects that come with that! And I bet it’s not the active ingredients that cause the problems but the stuff the drug companies add to stick it all together!
Oh, I tell folks off "We are NZders not American". Rather be called KIWI overseas or by my name JOY but not Madame.
You have been through the mill with anti-co.agulants. Personally I would stop think positive and hope that you don't have a stroke.
Mine was caused with no meds but THyroid cancer. The cancer caused AF whch caused the stroke. My carotid arteries were clear. One rogue clot to my left frontal lobe.
Some swear by Warfarin.
Pradaxa offer 110mg x twice day from 150mg x twice day.
My stroke was mild. At year 4 just right fingers - still can't knit and speech not perfect. Also 3 clear neck scans.
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