With much (probably unjustified) reluctance, I eventually decided to take 5mg Apixaban - twice a day. This had been prescribed some time ago but I really didn't want to take it. Reading up, and time, persuaded me.
After a few weeks, I developed odd changes to several toes. Checking up on images, the nearest I could find were chilblains. An issue I have absolutely never previously had. (I'm not 100% sure - no pain, just an odd sensitivity and a bit swollen, and shiny!)
So I quit the Apixaban - and my toes have returned to my normal over about three weeks.
Any comments? Thoughts? Suggestions?
I have permanent afib. And take nothing else except levothyroxine (and a topical cream for pain).
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This is an interesting thread for me - I'll tell you why. I too have a small lump on my small toe. It's not painful but it is if I wear tight shoes and walk far.
I will follow the thread and read others' responses. Ty for bringing this matter to the public forum.
I felt that if I didn't do something to address the issue, they might well become positively painful. (All in my head, of course.) Rather than just a little not quite right. Definitely a bit of pain from my shoes.
And I'm now really kicking myself for not taking a photo!
You really need to sort this situation out with doctors as anticoagulatoin is not a luxury, it is vital if you have permanent AF. A catastrophic stroke would be a lot worse than sore toes. Please see you doctor and discuss.
I've had afib for many years without anticoagulation even being mentioned. Nor have I had any treatment except Bisoprolol offered but without any further discussion. Was under a consultant for a few hours - then returned to GP care.
And have had other (unrelated) issues for the past year or so.
(Well over twelve years ago, GP checked blood pressure, noticed heart rate and panicked. I was told I had afib, sent to hospital as out patient, given Holter, then returned to GP. Who offered statins. My cholesterol was already at the bottom of the range - approaching hypocholesterolaemia - so I didn't want them. That episode made me realise I've always had tendency to afib. At least from late teens through to current nearing 70.)
I'd disagree on anti coagulation being a necessity for all, I believe the decision depends on your CHADS2 score and its updated version, the CHA2DS2-VASc score. Caveat I am not a cardiologist but the above is what my cardiologist explained to me.
You mirrored my thoughts, Bob. I hadn't realised just how many strokes are attributable to AF nor, as I am sure I read somewhere, that an AF stroke is more likely to be a catastrophic one.
It’s shocking to read. In fact one of the main causes of the increase in “all cause mortality” is, I gather, heart rhythm disturbances. I wonder if that means undiagnosed and untreated AF?
That’s what I’ve read, too. I’m never sure what what to make of it. Are those 25% treated with anticoagulants, for example or are undiagnosed AF? Also, age-wise, are they frail or suffering other illnesses? Statistics without context and information are always confusing and often intentionally so.
I haven’t had any side effects with apixaban, but it certainly gives me peace of mind. I don’t have other risk factors such as high blood pressure either. However, increasing age and persistent AFib do mean that stroke is a risk.
Perhaps your GP can try you on a different NOAC or on warfarin? I suppose I leapt at the chance of anticoagulation when I was diagnosed (at 67), due to the personal experience of both my sisters having strokes ‘out of the blue’ at 64 and 65. Luckily they recovered at that point, but both had undiagnosed AFib.
You must discuss this with your medics. AF makes us all with the condition liable to clotting of blood in the heart, which can travel to the brain and cause a stroke, which would be somewhat worse than sore toes.
Sore toes alone - and not yet too bad - might be bearable.
But the complete picture would require consideration of issues such as sore toes reducing exercise such as walking. As well as general feelings of well-being.
And without deeper understanding, toes might only be the visible symptom for me. Could the same processes that are occurring in my toes also be affecting me elsewhere? With whatever consequences.
The fact that you have had AF for many years without anticoagulants being prescribed is best described as having dodged a bullet. Please carry on with your prescribed medication and discuss with your Dr about any (possible) interaction with your toes.
Anticoagulants are not drugs you can stop at will, immediately your risk of stroke ( high risk with AF) returns.
just to add a bit more detail on stroke risk, there is a calculator here, **for me** it says:
0 points
Stroke risk was 0.2% per year in >90,000 patients (the Swedish Atrial Fibrillation Cohort Study) and 0.3% risk of stroke/TIA/systemic embolism.
One recommendation suggests a 0 score for men or 1 score for women (no clinical risk factors) is “low” risk and may not require anticoagulation; a 1 score for men or 2 score for women is “low-moderate” risk and should consider antiplatelet or anticoagulation; and a score ≥2 for men or ≥3 for women is “moderate-high” risk and should otherwise be an anticoagulation candidate.
CHA2DS2-VASc score (Birmingham 2009) was developed after identifying additional stroke risk factors in patients with atrial fibrillation.
Validation study included 1,084 patients with non-valvular AF, not on anticoagulation, over age 18 with EKG or Holter diagnosed AF in the ambulatory and hospital settings from 182 hospitals in 35 countries from 2003 to 2004 and had known thromboembolic status at 1 year from the Euro Heart Survey database.
End point used was stroke or other thromboembolic event.
Used previously developed Birmingham 2009 schema, under the acronym CHA2DS2-VASc.
Study showed that as CHA2DS2-VASc score increased, rate of thromboembolic event within 1 year in non-anticoagulated patients with non-valvular AF increased as well.
Considered score of 0 to be low risk for TE events (none seen in cohort at one year), score of 1 intermediate risk (0.6% rate at 1 year), and greater than 1 high risk (3% rate at 1 year).
Points to keep in mind:
31% of the patients in their original study group were lost to follow-up at one year and thus were not included in the analysis. These patients could have had thromboembolic events, causing them to be lost to follow-up.
There was no statistically significant difference found between the CHA2DS2-VASc and CHADS2 risk stratification schema in predicting TE events.
None of the included patients were anticoagulated. Those at particularly high risk for a TE event may have been already anticoagulated by their PMD, potentially skewing the TE rates.
A subsequent study examining the performance of CHA2DS2-VASc in predicting TE events on anticoagulated patients also identified CAD and smoking as potential additional risk factors for TE in this subset of patients. However, that study also did not show a statistical difference in the predictive avarious risk stratification abilities of the scores.
Have you tried an internet search? I just did and found several sites that may be helpful to you, one on the side effects of apixaban mentions joint pain and swelling, there's a research paper too so may be worth you having a look.
It would be good to know how many people take Apixaban in the UK, in order to be able to put this in context. Also, whether the yellow card system is picking up all problems happening when people are on the drug, rather than those attributable only to the apixaban. That’s not to minimise the possible side effects, but it can be difficult to analyse.
Unfortunately, that very obvious statistic (numbers taking it) is much more difficult to find.
The Yellow Card system is absolutely, definitely NOT picking up all side effects and adverse events. But, as you suggest, I'm quite sure it is not possible to be sure of the causes from those statistics alone. Classic one is a physical injury resulting in death - largely through excess bleeding.
Not meaning to be too critical, after all, without even that we'd get nowhere. (I'm actually very critical that medical staff are appalling at doing Yellow Card reports. Some of which is simply not having time allocated to such activities. But it needs to be seen as a core part of the health system - recording what is happening in, so far as possible, all circumstances.)
I know that I tend to be quite pro-anticoagulation for my own circumstances, due to a few things really. A lot of strokes in my family, on both sides. Also, I had a retinal vein occlusion before I was diagnosed - which my optometrist described as “a wee warning sign”.
One of my sisters had a mild stroke, but became a lot less active. (She was 12 years older than me.) She was on warfarin for a good few years. Then after a fall downstairs, she had a difficult phase and didn’t get her INR checked properly - it went up dramatically and she was switched to apixaban. A few months later and another fall showed a microbleed on the brain. She didn’t trust the apixaban and I think came off it at that point. I’ve no idea if the microbleed was from when the INR went haywire, or whether it was another fall or the apixaban. Anyway, she told me on the phone that she was to stop the anti-coagulant.
Within about two weeks she had a massive ischaemic stroke from which she didn’t recover. There are problems of course, when people start falling. Though right now, I feel I am best to take my apixaban.
That looks to be around 729,000 items. But we have to consider what that actually means. For people who get one, two or three packs at a time. And it is England only.
Screenshot of Apixaban prescriptions over the years
I am no statistician but on those numbers the percentage of total reported reactions = 0.5% or thereabouts. I’ll take that risk over 22% risk of stroke which is my current risk factor.
But statistics are just numbers and what happens to the individual is very different and it seems that you would not be persuaded and that is your right to choose.
There is a strong tendency for Yellow Cards to grossly under-report issues. And that is especially the case when people are on multiple medicines. I suspect it is even more common when everyone involved is convinced that the medicine is essential. After all, if it is stroke or death versus a few side effects, it is so obvious that the benefit outweighs the issues. But time sometimes shows that things are not quite as obvious, as simple, as that.
The COX-2 inhibitors story is one that bears reading - though it is far from being alone.
Your point about statistics is absolutely core. You cannot regard an individual solely through population statistics.
I had a stroke in late 2014 -(precisely because I was left alone for several hours), however, after the stroke, I recovered very quickly, and after 2 years, chose to stop taking anticoagulants. Why? Being a person who believes in pro anti-medicinal drugs - there was absolutely no signs of a stroke suddenly - even after 7 years had passed by. I have been a patient of Anti fibrillation and have survived adequately rather than be advised to take beta blockers.
I've had quite a lot of AFib episodes over the last few years, confirmed by both my Apple Watch and a Kardia yet I have not seen a consultant despite being referred nearly 3 years ago. One telephoned, said he did so because there were no appointment available in his clinic. We had a long chat, he said I should be on anti coag and should have an ablation. I thought he must be quite a magician to diagnose without having ever met me. I explained about the Kardia recordings, he asked for copies, then still without seeing me he wrote an outcome letter to the GP saying he had seen me in clinic and looked at the Kardia which didn't show AF (despite them being labeled as such) so I wouldn't need an ablation. He said he arranged a follow up appt but he hasn't. I've had two outcome letters both saying he saw me in clinic and referred to a follow appt and said I'd refused anti coags, I didn't I said I was concerned because. My mother took Warfarin and when she had her 2nd stroke it killed her because she had a catastrophic bleed. As mentioned, we're now in year 3 I still have AF triggered by evening meals but I've decided that as I'm still here and I've not suffered anything worse I'll just carry on. I doubt I'll ever hear from them.
I'm not sure there'd be much point. There are 2 practices in the village, a one man practice who loses patients because he's pretty hopeless and mine which has a few better doctors and when you're told they can't go against practice guidelines then you know they're putting themselves and their job before your needs as a patient. I'm going to have to be at deaths door before I go there for any sort of ailment. I'm 72, I'll take my chances with better informed help like these forums and even Dr. Google.
What a very sad state of affairs. I left an excellent GP practice back in Devon and unfortunately have not been impressed by the GP practice here in Sussex and very mixed views on secondary care, some of which is excellent whilst other is none existent but I will say that anything that requires immediate treatment is given.
It is the consistent day to day care and monitoring which seems to be lacking and very inconsistent across the country. Too many patients and too few staff.
Last blood test that checked my kidneys was a long time ago. While I have no basis for thinking I have a kidney problem, it is obviously an important issue to consider.
Direct-acting oral anticoagulants (DOACs): paediatric formulations; reminder of dose adjustments in patients with renal impairment
Risk minimisation materials are available to support the safe use of new paediatric formulations of rivaroxaban (Xarelto) and dabigatran etexilate (Pradaxa). In addition, we ask healthcare professionals to consult the current advice to ensure that all patients with renal impairment receive an appropriate dose of DOAC medicines.
That is why anyone on anticoagulants is tested every 6 months and that notice refers to paediatric formulations so not relevant here.
A base line Liver and Kidney blood test should have been taken PRIOR to starting A/Cs because there some people who absolutely should not take them. Your GP is failing in their duty of care if this was not explained or acted upon.
I am tested every 3 months and I go tomorrow for my next test. Many drugs are hard on both kidneys and liver but one has to balance risk with benefit and I for one am grateful for anticoagulation as I had a TIA after discontinuing Apixaban after no AF for 12 months.
Did you miss the bit that expressly says in bold type: Advice relating to adults
I have already had an issue with Rivaroxaban which is why I switched to Apixaban.
Yes, I completely agree that it is a balance of risk. In other areas, I am intensely aware of inappropriate/inadequate and just plain wrong prescribing of medicines. For example, my mother had so many problems due to clopidogrel which the GP simply closed her eyes and ears to. When she stopped, immediate improvement.
Technically, hospital consultant advised GP to prescribe, and then disappeared from the scene.
It took a while for me to read up and decide. She mentioned it at appointments for other issues. And I accepted - but no additional tests at that time. None even slightly recent for kidney - though not that old for liver.
Rivaroxaban caused eyesight issues within days. I simply could not focus properly.
So that was changed to Apixaban next time I saw her.
I have been taking Flecainide and Eliquis for over two years. Few months into taking it, I noticed my toes on both feet feel numb. I brought it to the attention on both GP, cardiologist and also EP who prescribed it, just blew it off, wasn’t interested at all. My thinking is Flecainide is the problem but EP , when I asked about going off or reducing the amount, said it was such a small dosage , would not hurt me. I have not felt like my self since taking it but can’t point to anything particular that I can prove, it’s doing to me. I just keep moving my toes trying to get rid of the numb feeling, not working though.
I do know someone who said that after a few years of taking a high dose of flecanide she felt as though her feet were in stockings ( slightly numb). I also thought I had the same problem with my toes ( was also on high dose) but years later and now not on flecanide, I still have the problem and have discovered it to be nerve damage coming from underneath the ball of my foot. I think flecanide can cause nerve damage but if you are on a small dose I’m not sure..
Mmm, I’d noticed that I get the odd feeling in toes, didn’t realise it’s Apixaban. I don’t like being in it as I bleed profusely as it is! Consultant changed me to Dronedarone and it apparently increases effect of the Apixaban 😳 He only said ‘you’re not on an anticoagulant now are you! To which I said yes I am. Why do they not discuss possible side effects and what to do?
why don't they discuss them, with a patient do you mean? Because they assume that patients couldn't possibly understand or know about their disorder, that's their job you know. By the time they make consultant they believe only they and fellow medics know anything about their subject field. I hate being talked down to like I'm some sort of moron, it's time they woke up to the internet library of knowledge, they might even learn something themselves.
well, I’m a qualified Professional, Complementary Therapist 25 years with a high level Anatomy & Physiology. I’m multi disciplined. Arrogant characters and sad to say, all I’ve seen are men except a lovely Consultant Endocrinologist 👍🏻
Yes, realised my ties and foot pain might be that drug too.
I think it is essential that you return to your GP asap armed with a print out of the article that MrJames kindly gave you the link to and ask your doctor to fill out a Yellow Card or you can do it yourself here yellowcard.mhra.gov.uk/
It may be that you are one of the few people oral anticoagulants are not suitable for however stopping anticoagulants does NOT diminish the stroke risk which would mean loss of independence entirely.
Psoriasis - if it is that and only your doctor can diagnose, is a skin condition.
Whilst we all want to take as few drugs as possible I’m not sure the collective ‘we’ know enough about anticoagulation to say whether or not they would be effective and carry little or no risk for you (no one can tell you that) what we can say is that we do believe that the case of risk of stroke when you have AF is proven - therefore you need to take advice from a specialist - which might be a haematologist rather than cardiologist if you can live with AF without taking drugs?
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