I work in private healthcare . Just had a call from an elderly patient who had a brain bleed she was told by the hospital was caused by her DOAC in this case Apixaban .Unconcious for a month . Brain surgery . Ironically they didn’t detect AF while she is in hospital . Further cardiology tests tomorrow. For someone like me who has had two episodes of AF in 3 years and 8 months makes you think about the risk/benefit analysis in individual cases
Apixaban bleed : I work in private... - Atrial Fibrillati...
Apixaban bleed
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Peony4575
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•
BobDVolunteer
Its always a choice we must make alone.
• in reply toBobD
As long as it is an informed choice. My guess is that many very elderly patients are still more comfortable with their doctors making treatment choices for them. Many doctors seem reluctant to do that now.
Thomas45• in reply to
What is your definition of "elderly"?
• in reply toThomas45
Elderly 75-85
Very elderly 85+
Having said that, chronological age is merely a useful guide and there will be a wide variation in “health” at any given age.
Thomas45• in reply to
The NHS doesn't use the word "elderly", because it means different things to different people. I am not elderly. I am 78.
I like Hidden 's useful definitions. It's just a number!
It's not a number, it's a meaningless word.
It's actually in all the dictionaries I've got.
Rather than think it is "meaningless", what about relating it to "the elders" of our tribe ... someone to respect! 🤔
I prefer this: "We prefer to specify ages: over-65s, over-75s, over-80s. ... We do not use the words: elderly, middle-aged, OAP, Old Age Pensioner, senior citizen, senior or persioner" Copied from the NHS digital manual.
😲😱😳🙀 Wisely the NHS didn't include me in the list of recipients for that manual.
Now if we could only get the Forum members to reveal their ages in their Bios, or even the country where they reside. Now that would be useful!
Surgery in this situation would most likely be for a subdural or possibly extradural haematoma, following a fall with head injury. Anticoagulants don’t generally cause spontaneous haemorrhages.
I would be interested to know the protocols for prescribing ACs for anyone over 80, when the risk of falls in individual patients presents a problem. Frequent reassessment would be essential.
Peony4575• in reply to
She didn’t have a fall . She is over 80. She felt off for a few days then became very unwell with severe vomiting . She didn’t report headache but I think the whole thing is a bit of a blur . She is normally very sharp and sounds the same . She lost the ability to speak for a few days . The local hospital said she was too old for an op but the specialist centre said they had just operated successfully on a lady of 102. She does remember that the paramedics thought she was having a brain bleed so may have been other signs she didn’t pick up on or doesn’t remember
• in reply toPeony4575
Presumably the apixaban has been stopped? How has her recovery been?
Peony4575• in reply to
Yes it was stopped immediately . She is a tough, feisty old lady and apart from a great deal of anxiety which is understandable don’t seem to have been long term consequences. Couldn’t detect any change in speech and she was acute as ever . What the outcome would have been if they hadn’t operated I don’t know and we are lucky to have a world class neurology centre half an hour away . She’s tired . Cardiologists are starting investigating presumably for AF tomorrow . She says her son takes her pulse and BP regularly and hasn’t detected anything but who knows. I think she’s been very lucky
Hi
Sounds like an aneurysm. She lucky she didn't die. Unconscious or semi-conscious?
Not a stroke, ischaemic Haemoidic or Embollic?
Aneurysms give a fair warning that something is about to happen.
Dear sole was she on life support during the month unconscious?
cheri JOY
She was unconcious for a month. Brain surgery but I don’t know quite what . In hospital 7 weeks. Told it’s a bleed rather than an aneurysm
bean_counter27• in reply to
I'm not a medical professional but was under the impression that one of the significant risks with taking anticoagulants (AC) is spontaneous major bleeding. When I was diagnosed with AF I said to my cardiologist I suppose I will be starting AC. He said, no - the risk of an intercranial bleed is greater than your risk of stroke (subsequently found CHA2DS2-VASc scoring system and scored myself as 0, which made sense of why no AC). Anyone who is on AC's should be acquainted with the risks - and know the symptoms for spontaneous bleeds (so should others in their household).
If there weren't any risks with AC, everyone would be on them!
Agree . Unfortunately there are no good options
Forgive a naive question, what are the symptoms of a spontaneous bleed on the brain?
I don't know. I don't take AC so i haven't had a reason to find out. A quick Google came up with...Symptoms of a brain bleed vary based on the type, but could include:
Sudden tingling, weakness, numbness or paralysis of your face, arm or leg, particularly on one side of your body.
Sudden, severe headache.
Nausea and vomiting.
Confusion.
Dizziness.
Slurred speech.
Lack of energy, sleepiness.
Thank you x
Reply also for bean_counter27 and Peony4575 and Hidden .
Also Steve101
My spontaneous/unexplained chronic bilateral subdural haematomas, after a period of minor head symptoms too vague to go to my GP, finally attracted my serious attention when my left hand occasionally became paralysed for about 5 mins on each of 3-4 times over 10 days, but I'm not totally sure about those numbers. I had been hoping it would resolve itself without needing any intervention.
Anyway, I was fortunate that my bleeds (though frighteningly extensive and deep on imaging) had ceased by the time of that first scan, and treatment was conservative with 10 days of steroids, and no surgical intervention.
However, 5 years later when I was diagnosed with AF and apixaban advised, my risk/benefit calculation left me deciding not to start anticoagulation. And this remains my choice, given I have no comorbidities, but am still disappointed that I still haven't been able to have a face to face discussion with a medical risk expert about my choice. So, sadly, I'm not sure my decision is the "informed" one I need.
PS. I should add that I live alone, and one fear I have, if I was anticoagulated, is that a repeat brain bleed could be catastrophic before I have time to call for help.
That’s a difficult situation to be sure. I can’t advise obviously but in your situation I would do the same . When I had my two episodes which lasted 24 hours each and I wasn’t anti coagulated I went into hospital and they gave me injections of heparin I don’t know if that is an option for you
A tough decision either way, especially without being able to discuss the pros and cons with a medical expert. If the REACT-AF trial demonstrates the effectiveness of time-limited use of AC in response to "eligible" episodes i.e. only some of your episodes would require you to take AC for something like a month) that could be an option for you. However it might be 3 - 5 years before outcomes from the trial and relies on having a device (Apple watch (modified?)) that detects AF episodes and their duration.
The logic behind the trial makes a lot of sense. The current 24/7 use of AC is a one size fits all approach to anyone with AF using AC. It doesn't take into consideration some people have infrequent and/or very short episodes and other lengthy and/or frequent episodes or have persistent AF or permanent AF. Do those having very short episodes or infrequent episodes need to be on AC 24/7?
If I was older (eligible for AC) and on the trial, based on the trial's parameters I think I would only have been on AC for 1 month in the past year. That would have been in response to an episode I reckon went for 14 - 15 hours. The other 5 episodes I had were limited to a few hours.
The other problem with stopping and starting ACs I am trying to look into is a rebound effect if you stop them . No doubt these are dangerous drugs and no easy answer if you are a person with very infrequent episodes and no co morbidities . I have a friend who is a hospital consultant who had a couple of episodes after drinking too much he’s 67 . He restricted his drinks to no more than 3 hadn’t seen anyone about it and isn’t taking any ACs
Yeah, I read a comment about the increased risk of stroke from stopping AC but wasn't sure whether that meant more than usual for someone in your position who wasn't taking AC to start with or just higher because you'd reverted to your pre-AC higher level of risk. It wasn't clear.
It means your risk rebounds to a higher risk than it was before you started taking them . How long that lasts I don’t know . If I stop taking them I will drop a quarter tab a month or something like that to try and ameliorate that risk
Hi
I was given a choice of anti-co.agulants. Aged 70 after stroke with AF.
I chose PRADAXA. And was given 110mg twice day.
Why because twice a day felt safer and there was an antidote.
All 3 operations I dropped it for 3 clear 24 hr days and then I discussion when to restart. Last surgeon said the night of operation but anaesthetist said no, 2 days after and I left it 3 clear days after.
A friend ran out of her PRADAXA 110. It was 5 days without. She had a stroke on 6th day.
New Research Radcliffe Research, UK says those who have cancer should not take an anti-co.agulant.
Not sure why one would have a greater risk of a stroke if the anti-co.agulant was stopped and then restarted.
Stroke symptoms was a very sore head. CT showed a left-frontal lobe site. Embollic stroke but Carotid Arteries Scan on 4th day were squeaky clean. But I was diagnosed with Rapid, Persistent AF, Rapid Heart Rate. Latter scan shwed a shadow on my thyroid so I had Papillary Cancer.
cheri JOY. 75. (NZ)
Wow. Sounds like you are healthy right now. I understand your worry. My brother, late 70’s, is presently in the hospital from a stroke. He lives in Mississippi but went to help out a brother-in-law in New York. He suddenly had a stroke while there. The good news is that he is awake, alert and alive. The bad news is that he can not move his legs or left side. He worries about being in such a state permanently. He had stopped his anticoagulant years before.
What are the symptoms we should look out for?
As an ex-health professional, having done my own research, I refused Edoxaban (part of the same group of drugs) when my GP wanted me to stop my Clopidogrel and Aspirin, which I take without incident.Refused on the grounds that there was no antidote for the (potential)"but increased risk of bleeding.
GP didn't put up any argument.
That told me my refusal held water.
You are more at risk from asprin!
At least with Aspirin there is some protection from bowel and breast cancer 😊 It’s all difficult choices
In isolation, and not knowing the context, that is a sweeping statement you make and not a useful, nor helpful response.My multiple conditions are complex, and I'm at risk of a million and one things, thank you very much Dr. ??
All medications have the potential for side effects and frankly, Aspirin is
way down my worry list as I take another medication to protect and counteract its potential for internal damage.
I have medication and health reviews every 4 months, and I'm guided by my team of Specialist Consultant's, not by a rather mediocre GP who just wants to protect her practice's budget.
End of the day, my life, my choice.
Depends why you are taking them I guess . They are both anti platelet rather than anti coagulant . But as an ex health professional am sure you know what you are doing
Myya• in reply to
I will be 90 in April, I was on 2.5 mg twice a day, now on 5mg twice a day. The cardiologist said there has to be 2 out of 3 things wrong with me , being -over 80 : weight being under 130 pounds : kidney tests being low, before he would reduce the Eliquis back to 2.5 . My kidneys are good and am 140 pounds , so he would not reduce the medication. I am in permenant AFib, and am not a falling person. I think I felt better on the 2.5 but the doctor feels the stroke risk would be greater. So I have to blame any change on age, I guess!
Thank you for your words. I always wish I could go to the 2.5mg. I appreciate what your doctor told you. My husband was on the same dose as me even though he weighs 90 more pounds than me. That seems strange to me.
That's a very sad story Peony, thank you for making us aware. Hope this lady picks up well.
Jean
I think she will Jean thanks. She’s been very lucky
My Aunt had a subdural haematoma,not on AC or aspirin. Totally unlinked. No fall either,just a gradual loss of function.
Complete recovery ,after a drain. 5 days inpatient.
Back to normal feisty activity(dyed in wool feminist,and inspiration) within few weeks.
Very positive experience, hope so for your patient.
Is she at Nottingham? Very good centre if so.
If AF or AFlutter is present,I know my take is to be on AC. After a mini stroke,and not even moderate to high risk,scared the living crxp out of me.
Until you've experienced that,.....
I agree with you. I was low risk so decided not to have an anti coagulant. Then I had a heart attack because of a blood clot. I’m on apixaban now and wish I’d taken it earlier, even though I’ve recovered well.
No not Nottingham , The Walton Centre . It’s difficult . When your episodes may be years apart you are getting all risk and no benefits . But then you are covered . I will have a conversation when my overdue review arrives
Similarly a friend of mine had a subdural haematoma, not an AF sufferer and not on an anti-coagulant, unfortunately, the symptoms appeared when she was in a rural area, far from a hospital and sadly did not survive, is it possible that the anti-coagulant is blamed when it is not responsible?
An anticoagulant may or may not be the cause of a spontaneous bleed but it certainly would increase the danger from it . Sorry about your friend
I’m in Australia. Have been on Apixaban since an ablation 11 yrs ago, very rare episodes of Paroxsysmal AF since. Was on 10mg Apixaban until I turned 80 and then the dose was halved…said to be because the risk of bleeding on the brain was higher after age 80.
Nothing was said about increasing risk of falls or anything. Fortunately, I am fit and exercise daily at 83.
Glad you are fit Polly. This lady’s drugs had not been reduced she is 85 . The drug does not increase the risk of falls as far as I know. Just statistically the risk of falling after age 80 goes up
I was taken off Warfarin in preference to Pradaxa but told at that time that it was one with an antidote in case of bleed and I carry a card with me. I was also told that when I reached 80 I would be taken off of this drug and changed to another (i've actually forgotten!) but reading the blurb it states that at 80 the drug strength should be reduced as the elderly were more likely to take a fall or two and consequence could be a bleed. I mentioned this to the surgery pharmacist and as a consequence the drug will be reduced in April, when I become elderly!!! Having suffered a stroke as a direct cause of A/F over 20 years ago I have taken meds ever since, the Warfarin a b.nuisance because of continual testing, I even bought my own kit at great expense so I could do this at home so the, the DOAC makes life much easier in that respect. 18 months ago, whilst playing table tennis with an over zealous doubles partner, I was knocked to the ground and broke my hip, thankfully no bleeds but I am now aware of the risk of falling so have to take more care and no more rough games lol. I hope your client makes a good recovery.
That’s interesting thank you. I wonder how many over 80’s do get their dose changed if they don’t ask for it
I read everything, I new something had to change but my memory was sparse on the subject so I read the blurb again otherwise, knowing the system as I do, no one else would have advised me......
I think the package insert for Eliquis recommends 2,5mg twice a day and a weight of under 60kg for 80 and over. I was on that dosage (I'm 80 and under 60kg) for a few months after it was recommended on this site as being the preferred anti-coagulant for AF -but it gave me awful heartburn, so I have gone back to Xarelto, which does not have side effects for me.
May I ask what dose xarelto you are you on?
20mg per day, that seems to be the dose for Afib regardless of age or weight.
Yes I agree, my doctor won't at present drop me to 10mg despite me being 83years old and 57kg in weight! It does cause me concern but I don't wish to have a stroke either.
Thanks for the reply, I wish you good health. Tom
Yes,I shall be 80 in June and I weigh 53k. My height used to be a quarter of an inch under 5ft 7 inches. It's now 5ft 5. I hope to halve my 5mg dose of Apixaban then. Peony's post has reinforced my decision.
I wasn’t aware of the halving dose at 80 recommendation , just the weight one . I wonder how many patients who are not regularly reviewed are just left on the same dose
I don't remember being told anything about my weight so will read the blurb again lol.
Dose is halved in people of low weight . Cant remember the threshold off hand as not in that window
It's under 60kg and age over 80. I realise it's debatable as one day you're 79 and the next 80. This last year I have have had nosebleeds, not caused by Apixaban but made worse by it. Before I was diagnosed in September 2019 I would get the occasional bleed. Often it was in the winter going from cold atmosphere to warm. I had a severe one in May. GP gave me Naseptin cream which has helped. She said the waiting list for cautery was 9 months. That doesn't always work. I do understand the severity of having a stroke due to AF. That was made clear by GP and at the patients day in Birmingham last October. My brother in law had a bleed on the brain which was fatal. He was on Edoxaban. Sadly I don't have much more knowledge than that as my sister didn't want to talk about it. It was 3 years ago.
I think it has to be two out of three things, in order to lower the recommended dose. Over 80, under 60kg, and renal impairment.
A lower dose was just discussed during a recent hospital stay for me - but I don’t fit any of those requirements at just 69, and quite a few kilos over. I’m in permanent AFib, with a strong family history of stroke. Just 2 on Chadsvasc.
I had labyrinthitis, leading to vertigo and violent sickness. Ended up in A&E as I brought up blood. Had an endoscopy, three clips in the lining of my oesophagus. Was off the apixaban for quite a few days, also had a blood transfusion and iron infusion. (With another of the latter to come.)
I was advised to resume full dose apixaban on discharge, which was a relief - but I am so much more wary now. I don’t want to play Russian Roulette with stroke though.
My brother had spotted a small article in the Daily Telegraph on 13th February about NOACs. It was about a MHRA ‘Yellow Card Biobank’ scheme, looking into whether some people might, genetically, be at greater risk from the new anticoagulants. I know I can’t add links here - but a search for MHRA yellow card Biobank apixaban should bring this scheme up. I filled in the yellow card details as advised, following a link.
I have been on a high dose PPI since the endoscopy two weeks ago, now due to start decreasing it. I’ve had swollen ankles, so hoping that reducing the dose will help. (Have seen my GP, and it could just be all those fluids.) Wouldn’t it be great if medicines didn’t have side effects! Even my Bisoprolol for heart rate lowers my naturally low blood pressure.
I am a Telegraph subscriber as it happens and have just looked it up thank you for the heads up. They want people who have had excessive bleeding on NOACs to fill in a yellow card and a nurse will come take blood and they will study the results . Conclusions due in 2026
I didn’t get told that they would take blood, but then I’m already a Biobank participant so they might have all they need.
I have signed up for it as have several people I know but we haven’t been contacted to progress. I guess they have a lot of people to process
I think I must have been one of the early cohorts. Have been for scans etc. twice - so Biobank will have samples of my blood. Funnily enough I just got a newsletter from them just now!
I think the best decisions are made once you acknowledge that nothing is clear cut.
I’ve known younger people that have had a subdural haematoma without any fall or knock. It can happen. In someone predisposed to this a blood thinner would increase the risk. Nothing in life is risk free.
How many people over 80 taking 'thinners' did not have a bleed on the brain ?
What a sad and worrying thing to read. Context is important, of course, and the incidence of AF-induced stroke significantly outweighs the rare cases of DOAC-induced haemorrhaging. Also, there will be confounding factors. I suspect that elderly people are naturally at higher risk of spontaneous cranial bleeding and she might well have had other individual medical issues, perhaps unknown. The DOAC I guess likely worsened the bleeding, but did it cause it?
To add to this poor lady's worries, because of her AF, she will need to be restarted on her DOAC fairly soon.
As Bob says, we must make the decision ourselves and be aided by our doctor's advice.
Steve
She won’t be going back on a DOAC . Whether it is suggested to her or not. There was no evidence of AF in the 7 weeks she was in hospital and she has been referred to cardiology for investigation . Undoubtedly the elderly are at higher risk for spontaneous bleeds, stiffer, less flexible blood vessels more likely to leak/rupture and frequently have higher BP
I can imagine how she must feel about it and hope never to be in such a situation. The poor woman. Your post prompted me to read a few studies and I was surprised to read that resumption of DOAC is the norm owing to the risk of stroke from an AF prone atrium. It seems there's no consensus that the AF in and of itself might be the cause of the dangerous micro thrombi and it could be the individual shape, size and nature of the atrial appendage. What a complex condition.
Steve
I am on warfarin because of the risk of brain bleeding. I have 2 aneurysms. One coiled, other sealed by a clot. I feel safer on Warfarin.
If this lovely lady is over 80 she should have had her apixaban reviewed at 80 as some people go on half dose after 80. I think this also has something to do with weight too had mine reviewed at 80 and Doc was fine as I weigh over 12 st - he mentioned kilograms to me but they mean nothing to me.
Indeed . I suspect she has pottered along on repeat prescriptions for years and no one has looked at this aspect of her health because it hasn’t been troubling her . The reality of general practice in the UK today . I am due my first annual blood test after starting Edoxaban . Month overdue . Will give them until the end of March and then chase them
So are you taking edoxaban only because of your age? Your Bio doesn't help me.
Yes I am 68. Low BP no diabetes or other chronic conditions if you exclude grumbling knees . Heart structurally sound, trivial leaks on valves which cardiologist said are practically universal
We had terrible trouble with getting my elderly Mum and Dad (both in their mid to late 80's) to go for reviews of their medication and eventually either my sister or I had to physically take them - despite protestations and my Mum throwing a hissy fit. No blame on the NHS but they both refused - mostly my Mum. They were both so stubborn - and my Mum ruled the roost, my Dad on his own would probably have been OK but if he came home and said the GP wanted to change a medication my Mum would go on and on at him and phone the surgery until they put him back on the usual decades old prescriptions. I am sure today they may have been asked to go elsewhere! One particular medication was one she had been put on probably 40 or more years previously for her heart which she refused to come off - though it was likely she hadn't needed it for the last couple of decades. Her specialist at the time - I'm sure a good man had told her she needed to be on this for life at that time it was likely the only medication for her, and he had probably not expected her to live much past her late 60's with all her ailments let alone outlive my Dad and get to her 90th year. This didn't necessarily do her any harm but was not doing her any good and was possibly affecting other medication or preventing prescription of better medication for her many other problems. We did get things sorted for them both - my Dad went along with everything but my Mum still quite often refused medication or spat it out because it wasn't what she should have - even when being given it in hospital. I'm not saying your lovely lady is the same but there are so many problems dealing with elderly people who have been on medication for a long time and have not been pro-active with their treatment.
I hope everything goes well.
Oh dear ! That sounds like a real challenge for all concerned . Clearly you and your sister doing their best . No the lady I wrote about is very proactive about seeking healthcare for her ailments and tends to put doctors on a pedestal. If she had been called in for a review she would have gone and accepted whatever changes were recommended . I think practices vary . I have never been called in for a health check which I know friends have . Fortunately am only on Edoxaban and HRT and I manage the HRT privately less hassle . I should have had a blood test after my first year on Edoxaban . A month overdue so far . Will give them until the end of March and then chase them
Yes it was. We got through it though.
I know not all surgeries do annual reviews. Mine will actually put it on my repeat prescription form and when the pharmacist hands over the prescription he will tell me next time you have to have a review - either with them or with the surgery - quite often I just say can you do it now and get it done. My surgery are also very good with the annual blood tests too. It does get harder to keep up with things like this as you age so glad that my surgery is on the ball.
Ha I don’t deal with people ! If I want a repeat prescription I have to request it via the nhs app . They email it to the chemist and a nice man drops it off at the house . For an appointment you have to fill in an online screed . You get a text message within 24 hours to tell you the outcome of the request . As I go rarely I feel a complete disconnect between me and the surgery . I don’t even know who the doctors are and the surgery certainly doesn’t want to talk to you God forbid . I don’t know how people who are not comfortable with technology manage !
Goodness! I sometimes grumble about our NHS and our surgery but don't know anyone else who has to do this for an appointment.
It’s the norm around here
Well my surgery is like Peony4575 's, except I never get a text update within 24 hours ... that would be a luxury! It can take weeks to get any follow-up action, and one important eConsult got "lost", when I actually asked for urgent attention. Then the limitations on the number of daily eConsults accepted means you have to scramble before the system is closed for that day. And no appointments possible even if I visit the Surgery in person. No blood tests unless I initiate a specific request on an eConsult. I do get an occasional lifestyle text asking if I feel "lonely". Doh!🤔🤫
And I am currently waiting for the results of my transthoracic echocardiogram 4 weeks ago to appear in my NHS App, despite the fact that the report is written and sent to my GP on the same day as the echo. I could send another eConsult to ask Admin when my report will be uploaded, but what's the point.
Then again, it is an understaffed overworked east London Surgery, so I am trying to be understanding(sic!).
bob
My surgery won’t put any notes or any results on the NHS app. Used merely as a tool to process repeat prescription requests and send vaccination appointments . And I get requests asking if I would like to take part in various clinical trials for which undoubtedly the surgery gets paid. They don’t post results and won’t give you copies until they have been looked at by a GP. I would recommend physically going down to the surgery and asking for a copy . That way at least you will find out if they have looked at it
Maybe I should be pleased that we don't have e consults. Had some telephone consults during Covid. My surgery can hardly use the system they had pre covid to do repeat prescriptions so don't use that any longer. We don't have the NHS App in Wales but friends in Oxfordshire have it and it works marvellously well for them. When ever you have any tests or scans ask the hospital to copy you into the results and replies which are sent to you GP - I have for about the last 15 years and offer to pay for the admin charge for this but never have paid. We got fed up with letters getting lost or not actioned by our old GP surgery. MY wife saw a consultant in about 2008 and he wrote to her GP with a change of medication. Not actioned and 5 years later my wife went to see another consultant about the matter privately and he must have found this in her notes. Since then have always asked for copies to be sent to us. any xrays or scans we ask the radiolgrapher to put on a disc for us - you provide the disc and they charge £10.00. Again after my wife's last visit to her consultant she was referred to have a PET Scan via the NHS. Thankfully we had this scan put on disc because when we went back to her NHS consultant he couldn't get it up on his PC so put our disc in and it worked - lucky because a growth was found on her lung which needed urgent treatment!
That is very good advice thank you . You have to be on the ball regarding your own health. I know you are struggling in Wales . I live near Chester and we have a lot of patients coming across for treatment
They are lucky that Chester is near enough and that particular treatment they are getting is not available in their own health area as we are not allowed to go out side our area if similar treatment is available within our health area. As for struggles with health care in Wales it doesn't sound as though it is just Wales. Our GP surgery is good and other than not being on the NHS App and the admins not being very computer savvy, which may be why we don't have such a good service with their own system. They do answer the phone we can get same day emergency appointments and wait 3 weeks for a routine appointment - but from there on waiting time for treatment seems to have become very long indeed. The NHS really is in trouble and I wonder how future governments will cope with this. I am not knocking the NHS it does a fantastic job and always has but seems to be falling apart at the seams at the moment.
Agree. I have several members of the family working in the NHS and they are working their socks off . I work in private healthcare and that is what our Welsh brethren are coming across for . You are right. Computer systems can act as a barrier
When I had my initial emergency diagnosis and multiple follow-on outpatient appointments for my subdural haematomas, the neurosurgeons I consulted always sent me a copy of his report. But with a transthoracic echocardiogram (only 2), the sonographer or cardio physiologist doing the report seems to be under an "oath of silence", and my requests for copies have not been successful. At least my first report was uploaded to the NHS App eventually, so I am better off than another Forum member whose Surgery doesn't even do that. I must say I am sympathetic to the efforts you have needed to undertake to ensure family health details are eventually seen and not lost completely.
Even my polio consultant wrongly said I had surgery for my subdural haematomas (after our only meeting), a complete error which he still hasn't corrected 15 months later. Doh!
Mind you, in addition to factual errors, I can imagine the antiquated multiple computer systems health staff are required to negotiate must also be responsible for many "Post Office" type errors and losses. What a waste!
Yes we also probably don't appreciate how busy the admins are. It's an enormous task to sort and it could be worse than the PO.
Understaffed and overworked across the NHS for sure
The computer systems slow down nhs staff for sure . The private hospital I work with has just introduced a new computer system and consultants are seeing less patients because of all the in putting they have to do . NHS introduced computer system to try and cut down on the admin staff so doctors are seeing fewer patients because they are doing all this admin
And "all this admin" is being fed into a computer system designed by a "Fujitsu-like" profit motivated NHS private contractor!
• in reply toPeony4575
Why is a blood test advised for Edoxaban?
Peony4575• in reply to
It’s for all anti coagulants to check your kidney and other basic functions , liver etc that might be affected or need the dose to be adjusted . It’s important that it is done even if you have to chase the surgery
• in reply toPeony4575
I'm not sure I knew that, but then I choose not to take an AC although I am prescribed one. This has been a very interesting thread and, as you say, remarkably affable compared to some others I've been a part of - or have started myself.
Agree like yourself I very rarely have any episodes and my legs are black with bruising since taking apixaban. Any cuts take ages to coagulate in fact I stop taking apixaban until any injury heals. I dont have high blood pressure diabetes etc and only qualify being prescribed apixaban based on Chad score through age and being female. I'm 83 snd under 60 kilos and bite my 5mg in half after 80 years as I read on the patients information sheet of the manufacturer that after 80 and if you are under 60 kilos 2.5mg twice a day is recommended hence biting the 5mg in half twice daily. I live in Spain under the health system here and not had any review at 80 years nor seen by a cardiologist since I first had an irregular heartbeat in 2016 due to stress. When I was referred to that cardio he said what are you doing here there is nothing wrong with you my ECG only once revealed any arrhythmia none since 2016 !
There’s a big fat question mark over your treatment . Worth going to see a specialist for a review if you can . I don’t get any bruising with Edoxaban . My Dad was covered in very vivid bruising when he was on Warfarin some years ago . Like you I don’t have high blood pressure or diabetes though not quite as slim ! Not overweight though either
I'm exactly the same, I've had approximately 4 episodes of AF in 5 years or so, I'm on apixaban an bisoprolol, biopsoprol makes me feel sick and blinding headaches, so I stopped, and all that went, so still talking apixaban in case of a blood clot due to AF.Like you living in fear of a bleed, I definitely felt a lot better and fitter before I started on all the medication, and wasn't so worried as I am now.
I refused to take Bisoprolol after having very bad experiences with it after short term use in hospital . I have low blood pressure and pulse around 60. I said why am I going to take a horrible drug every day for something that may or may not happen every couple of years . Am sticking with the Edoxaban for now but if years elapse until my next AF episode I will be keeping it under review
Thanks for your comments I agree I need to see a specialist it's getting to see one thats the problem here . I've mentioned to my doctor the over 80 review and maybe reduce the intake to 5mg per day and they won't listen. Had no review. Feel I need to go private it's nothing like the national health system out here in terms of patient care.
Many of us are having to go privately in the UK to get timely consultations/treatment . It’s worth it if you can afford it . You should have a review at 80 . Let us know how you get on
Interesting readinguspharmacist.com/article/do...
It is interesting . Saying the benefits of ACs in older patients, and they seem to be defining older as later eighties, decrease with age and should consider competing morbidity and mortality risks such as increased risk of spontaneous bleeding
• in reply toNugger
Excellent article. Thank you
Then you get the further complication that half doses do not necessarily mean lower risks ...
academic.oup.com/eurheartj/...
🤔
I seem to be encountering problems, but here's the article I was originally trying to find ... pubmed.ncbi.nlm.nih.gov/364...
Hi Bob am having trouble posting back to you . Got the article thank you. So it seems that there are few advantages to being on a lower dose , excepting being of light weight etc. Meanwhile for people with a low burden considering their future with ACs it’s like a merry go round you can’t get off
• in reply toozziebob
Very useful. Thank you
The bleeding risks of DOAC’s, especially in the elderly (of which I consider myself one at 82), is why I was determined to get a Watchman. I’m still in the blanking stage of a recent ablation with a Watchman implant simultaneously, so I need to be on apibaxan for a few more months as my heart heals and settles in, but after that I am DONE with anticoagulants and my stroke risk is 1.53% instead of 20% as in the oft-cited “the risk of stroke in people with afib is 1 in 5,” which is reduced by anticoagulation but not to 1.53%.
My husband was on warfarin for 12 years—and being on an anticoagulant that long was implicated in the formation of a calcified aortic valve (a side effect of warfarin being a vitamin K antagonist), which led to a TAVR (transcather aortic valve replacement ) procedure implanting a cow aorta. At that time (2019), what is known today was not known then: people with aortic valve replacement should NOT be on DOAC’s. He was put on Pradaxa (now officially warned against by the FDA with any aortic valve replacement ). Soon after the TAVR and the start of Pradaxa, he started having “brain events,” as I called them, when his brain just went screwy for a short time), and his sudden descent into dementia started, worsening with each event. It’s called multi-infarct dementia. In retrospect, he was having brain bleeds, and within a year of the TAVR had a hemorrhagic stroke—all while still on Pradaxa. And died. Slowly and miserably.
No one can convince me that DOAC’s are simply innocently beneficial. They can have serious side effects. With a Watchman I will be free of anticoagulants. I believe LAAO (left atrial appendage occlusion—with a Watchman being one option) will become the new stroke prevention treatment of choice for those with afib. It occludes the appendage in the heart where over 90% of blood clots form in people with arrhythmias.
DOAC’s save lives, without doubt. But I wanted to find a way forward not to need to take them the rest of my life and decrease my risk of stroke significantly at the same time. I feel at ease with my decision.
Thank you for your most interesting post and I am very sorry for what happened to your husband . No drug is risk free and 100% beneficial . That’s why with only 2 episodes in nearly 4 years and taking Edoxaban every day I feel the risk/benefit analysis is not as clear as when someone is having frequent episodes of AF. I congratulate you on taking the steps you feel are right for you and hope you have a trouble free recovery
Two episodes in three years is enviable. My episodes were daily, consistent, on going by the time I finally went to the ER and was told I was in afib. Now that I knew what it was, I realized it had been going on for years, off and on, during which time I probably didn’t even mention to my doc that I had a bumpy heart, so had no ECG’s.
The afib became insistent and severe when I was under tremendous stress in 2020, taking care of my husband at home in dementia then a stroke during Covid while coping with a broken arm that was the result of my passing out when I stood quickly after being on diltiazem for just two days. (I have low normal BP.) syncope is a not infrequent side effect of diltiazem.
I hope your afib remains so infrequent. Your risk chances are there, but would seem low. I believe I read that the NNT (number needed to treat) for warfarin is 95 to prevent one person from a stroke or heart attack. We’ll never know if my husband would have been that one or safely among the 94 who would have been fine without warfarin. I don’t know the NNT for DOAC’s.
I’m currently on amiodarone, powerful and potentially dangerous drug, for 6-8 weeks post-ablation to minimize recurrence of afib. I experienced a recurrence two days after the ablation and a cardioversion did not last. Amiodarone’s NNT post-ablation is 1 in 6 for recurrence in the first 3 months. Those odds make taking amiodarone short term a no brainer for me.
But an NNT of 95 for warfarin? My husband hated it. I’d have to take a hard look at risk-benefit.
You have been through a lot . Am sorry . And coped remarkably . My Dad had continuous AF which I diagnosed after he said he was going lightheaded on his five mile walks. I felt his pulse he was in continuous AF and didn’t know . Equally he didn’t have a stroke . They put him in warfarin and digoxin he started having little haemorrhages at the back of his eyes . His heart started deteriorating after he was medicated . I hope the amiodarone works for you and your AF behaves . You have been very stoical and you certainly deserve some peace . I will have to see how I go . Am very well behaved regarding food triggers . I will speak to my cardiologist I think my next appointment is coming up . Please keep us posted as to your progress I would like to know how you get on . All the best !
I’m sorry about your dad’s difficulties. Aging hearts can be troublesome. And so can medications. And procedures. So we educate ourselves as best we can, deal with the medical system proactively, make the best decisions we can, and ultimately just cross our fingers. (-:
😊💕
After being hospitalized for fainting (3 times in one day) I was prescribed Apixiban and Cardizem. After 7 months, I saw a cardiologist who told me I did not need the Apixiban! I have a heart loop monitor implanted and it has detected NO instances of AFib after almost 2 years. I recently (January) had one of my paraythyroid glands removed (blood tests showed a PTH of 131 with the top of the average range being 95). These glands control calcium and potassium levels in the body and a malfunctioning gland can cause high calcium and all kinds of problems, including affecting muscle function. Well, the heart is a muscle. I am currently taking NO medication and am doing well. Of course, this is on the recommendation of my provider. I have a consultation with my endocrinologist scheduled next week.
What was the consultants rationale for saying you didn’t need an anti coagulant
Nothing brings out the comments like AC and the bleed vs stroke equation. I'm a stroke w/o AC with diagnosed AF victim. The effect of my stroke was loss of some peripheral vision. Not a debilitating situation. I now religiously use ACs.
Nevertheless , I do think about REGRETS. If my stroke had been debilitating I'd be living with those every day. Not a small QOL issue on top of the disability IMHO. If I bled out on AC today, at least I'd know I chose that active, and statistically superior, course.
Small thing perhaps, but I am very comfortable with using AC treatment. Less comfortable with regretting I didn't choose it.
Sorry that happened to you but glad you have made a good recovery . I have a friend who when he was 50 discovered he had AF when he had a stroke and hit a tree. . He also made a good recovery . No doubt anyone of any age who has frequent AF would be safer on continuous AC . Yes AC conversations are always busy and this one has been very affable 😊
After reading through most of the comments here I would ask everyone to remember that it is your choice to take any medication - no- one can force you. You need to make an informed choice. If you are on medication and having side effects you cannot live with also remember that you can change dosage and change medication to find one that is suitable for you.
This is a very sad story! I'm always concerned of the possibility of a serious bleed while on anticoagulants. I know now I'm not alone having read all the blogs here. Life is a gamble for sure. I wish good health to all. Tom
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