Can I please ask for some opinions on my situation. I know the majority of people on this forum are not clinically trained but I have found your posts so helpful as you are the people living with this "affliction". I was diagnosed with AF at the beginning of October after an overnight stay in hospital when 111 advised me to go to A & E when I was experiencing palpitations. I have a Fitbit which sent a notification to my phone warning of possible AF. I have had similar episodes about twice a year for the last few years but did not have a Fitbit so was not aware that AF was a possibility.
My AF was continuous until the beginning of January when thankfully I had a successful cardioversion. I've given up alcohol in the hope this will stop AF coming back although I know I will be extremely lucky if that's the case.
I had a follow up video consultation with a doctor yesterday, who said I would need to remain on Edoxoban and Bisoprolol. I am happy to continue with the Bisoprolol but don't want to stay on the anti-coagulant as I have severe back pain and want to be able to take Ibuprofen, as paracetamol don't really help. I explained to the doctor that I always know when I'm having an episode of AF as I feel my increased heart beat and now I get notifications on my phone so couldn't I just take the Edoxoban when I feel the AF starting but he said I should continue to take it.
Obviously I don't want to risk having a stroke but equally I don't want to take medication unless it's essential.
I would be really grateful for your thoughts on this and also whether there are there other things you avoid eating or drinking. I've read one lady does not have anything with Aspartame (thanks for that tip) so I'm doing the same!
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Trent
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What if you have an attack of AF which starts when you're asleep? Having worked in a nursing home and seen people there that have been affected by strokes - never ever do I want to be like them! Some can't move or speak, they look out on the world from bewildered eyes and are fed by a tube in their stomach. To me it's like a living death. They say we people with AF are 5 x more likely to have a stroke, than those without that condition. No thanks - I'll stick with the anticoagulants.
I also work in a nursing home and see what Jean sees. I wouldn’t stop the anti coagulant as much as I hate taking pills. We just had a 92 year old have the Watchman procedure. Wonder if any of us have?🤔
I’m not sure if you are aware, but Ibuprofen isn’t supposed to be taken with bisoprolol either unfortunately- it can stop its effectiveness. It’s not just the AOCs that you can’t take with it.
A lot if people with Afib avoid Ibuprofen altogether.
Trent,
Go get a 6 round revolver .... remove 5 rounds .... spin the chamber ! Then when you are ready put the revolver to your head and pull the trigger .... click! do it again ... click ..........
Seriously, its a no brainer take the anticoagulant.
I find it interesting that your post is all about AF, your pain control for your back gets little attention. SO, what are you doing for your back pain. What sort of back pain, SI. joint or what ......... are you under treatment from anyone ... Osteopath ? Chiropractor ? Witch Dr. ?
I regularly see a Chiropractor these days mostly for maintenance of the right SI Joint. I have experienced massive pain in the right knee which resulted in knee replacement surgery, now I have osteoarthritic pain in both shoulders, sleep being an issue .......... BUT I maintain the Warfarin, my preferred anticoagulant.
My pain relief of choice is CoCodomol 30/500 (prescription grade) which even worked on my post operated knee when morphine wasn't touching the pain. Its OK to take with Warfarin and I assume with these new fangled DOAC's too ... a pharmacist would advise on that.
HU have a HUB that deals with Pain, why don't you get on that and ask a few questions. I think its Pain Concern
Good luck with the revolver !
John
PS ..... how do you know your AF is not asymptomatic ? Just a thought.
Thank you for your reply. I have physio for my back as I have arthritis. Unfortunately I am not able to take Co-codamol. I will keep taking the Edoxoban as everyone has made it clear that it would be unwise to discontinue.
Fully understand that, my surgery iz like that down here in Cornwall ... I now have a zero relationship with my GP. Thankfully I have an outstanding relationship with my INR Clinic also located at the same surgery.
A spinal surgeon referred me to a pain clinic as urgent; I have far worse problems than arthritis and have been on opiods for 20 years. When I rang the pain clinic to make an appointment, I was given one for May 26th but that was ONLY for him to read the referral letter- nothing else.
No worse that it used to be. 20 years ag o my GP did an urgent immediate referral asi was was totally bedridden. That wait was originally 9 months but ended up as 2 years. The consultant didn't consider it t be urgent
I had a conversation with my GP in November about chronic back pain. He had prescribed strong painkillers ( not NSAIDs) over the phone. I didnt want to be on these longterm,so called back to see if the cause of the pain could be investigated first.His response was to stop flecanide ( taking 100x 2 ) bisoprolol and Apixaban. I refused to stop Apixaban and told him why.
University of Birmingham did a thorough study of the effect of cessation of Anticoagulation on patients with AF,even after sucessful ablation . They found that unexpected return of AF could occur randomnly,including when asleep,and that the risk of stroke remained as if you had never taken ACs.
He seemed surprised .
Btw stopping flecanide quickly sent me into immediate 24 af episode,annoyingly 5 months after a sucessful ablation. Now weaning off in May.
Its difficult to think of how best manage AF,its a strange beast,but ultimately,all the good changes we make can only help!
I found eating a larger meal after 7pm a trigger.
Good luck! Xxx
PS insisted on further investigations into cause of back pain. X ray request gone off.
Keep us posted with the weaning off of Flecainide. I've been AF free since last May but since coming off the Flecainide- which I did gradually- I've got these spikes of tachycardia. Don't last long and rates no higher than 110 but they're bothering me in case more is to come.
Presumably he told you to stop these meds as he thought they gave the side effect of back pain or were somehow making the backpain worse? I have a crushed disc in my lower back and Apixaban makes the pain much worse along with other joint pain. I discovered this when I was taken off for 8 days before my first hip op. The pain including the hip pain reduced a lot. I was off for a couple off days after the op ( had Lovenox jabs throughout ) and then about 4 days after resuming Apixaban the pain came back.
What happened was I spoke to my GP with back pain, by phone of course. He sent some stong paracetamols. They didnt help,so spoke again. This time he suggested I came off flecanide and bisoprolol ( and Apixaban which I refused) as he could then send ibuprofen based meds. I queried it,as had been tokd to stay on until review after my ablation.' Well,your consultant will only say that you need to stop now so.....'
So I did,in a few hours went into strong AF for 24 hours! Put mysrlf straight back on meds
Insisted on seeing other GP in person,agreed.
At follow up EP was most annoyed and said its put me back a bit for weaning off meds. I am now to stay on until May,then halve dose and record,see him.in June and hope to further reduce. So ,slowly and carefully.
Still not sorted back pain yet,but a form has gone off asking for xray appointment.
Ibuprofen is contraindicated with AF, so in any case you may have to choose. I think you need more advice re balancing the two conditions. Diltiazem is an alternative to bisoprolol though cardiologists much prefer the bisoprolol. I take diltiazem plus a bp med (Candesartan). It’s helpful but not totally effective.
It is a dilemma for people who suffer from chronic pain which require NSAID and anticoagulants at the same time. To be point blank, you cannot take anticoagulants only when you have AF episodes. It does not work that way. Doing so you run huge risks of getting a stroke. NSAID and anticoagulants do not go along well. Keep taking anticoagulants and see a spine specialist (orthopedist) for your back pain. Physiotherapy is very good adjuvant therapy as well as a chiropractor. Avoid to bend your spine and if needed wear a back pain belt support as well as heat therapy which help tremendously and it is cheap and you can do yourself.
I appreciate your situation. I’m living with sciatic pain down my lumbar & left side, osteoarthritis in both knees & currently planning a knee replacement of my right knee (hoping I can squeeze a few more years out of the left). Had surgery on both knees last year & felt surprisingly comforted when I could start taking my anticoagulant again post surgery both times. I keep my sciatica in check with core exercises & occasional reluctant use of co-codamol, works for me but would’ve loved to use some anti-inflammatories after surgery as the recovery was much, much longer without (had similar surgeries 20years ago - I know, I was 20yrs younger then…).
I honestly briefly toyed with a similar plan to yourself as I had too long on my back with my leg raised & little else to think about in the endless boredom. I quickly dismissed that plan though as the anticoagulant needs to be in your system to prevent stroke, it takes time to work & warning signs of AF would be too late to get it in my system for it to prevent stroke. Too late after the event….
With greatest respect, I know it’s not easy - I would advise you look at your pain management methods & try to adjust those.
Thank you for your reply. I've decided to stay on the Edoxoban and will look at different options for managing the pain. I wish you well and hope your pain subsides soon.
I feel your pain, literally! I have generalised osteoarthritis, knee replacement, steroid injections all over over the years snd found diclofenac the only anti inflammatory that helped. Along with cocodamol. Then the dreaded AF reared it’s head snd had to stop anti inflammatory and take anticoagulant. It got to the point where I couldn’t move because if the pain so had to look at risk /benefits…life of pain or risk stroke. I chose the painkillers. However. In December I had a heart attack I wasn’t that aware of snd had palpitations snd some dizziness at times since snd so I stopped the anti inflammatory drug, diclofenac is documented to be very harsh on the heart, and feel better in myself for it. I’m on edoxaban now but have been following the Mediterranean diet and anti inflammatory foods, increased cocodamol and although have more pain than when on diclofenac my heart is happier. I have been told edoxaban as a pill in pocket is a defo no no. I have flecainide for PIP. bit long winded but I read chronic use of anti inflammatory with anti coags is a high risk for bleeds but acute use to be used with caution. I wish u well 🦊
Thank you for replying. I will look into anti inflammatory foods as a way forward. I've decided to stay on the Edoxoban and will look at different options for managing the pain. I wish you well
Hi Trent. I’ve been looking up drug interactions because some very knowledgeable people here say not to use Bisoprolol with Ibuprofen. However, I am reading that the ( moderate ) interaction between the two is if you take Bisoprolol for high blood pressure as the Ibuprofen may reduce its effectiveness for that, more especially if the Ibuprofennis used long term.
Thank you very much for your reply. I'm going to follow the great advice I've received and will continue with the Edoxaban so will just continue with the paracetamol. Keep well.
As I've had a stroke and know the effects of that, because I was not taking an anticoagulant, I would definitely recommend you don't give up on that. It may be difficult to find alternative pain killers for your back but you sure don't want a stroke. If it's not fatal it is always life changing. And with AF without anticoagulants, it's like sitting on a time bomb.
Thank you for your reply. I'm so sorry you had a stroke and I hope you are now fully recovered. Thanks to everyone's advice on this forum I will be carrying on with the Edoxoban. Keep well.
I was recently in searing pain with rhomboid muscle injury. Couldn't sleep. As ibuprofen is off the menu I trogged off to my local "People's Acupuncture Clinic" and they worked magic. Not sure their success rate with back pain, but if they can cut the pain of childbirth they're good for most anything in my book. My pharmacist reckoned I'd be OK with external ibuprofen gel, but that never really worked for me.
Thank you for your reply. I have had acupuncture in the past but it wasn't very helpful. I haven't tried the ibuprofen gel but may give that a go and see what happens. Keep well.
Have yoU been asssesed by the cha2ds2 vasc2 and has-bled procedures. They are on the National Institute of Clinical Excellence (NICE) websiteIf you type
"cha2ds2 vasc2 nice" into google will download a pdf of these .
It should inform you of how A/C decisions are made .
Hello Trent, firstly I would take the anticoagulant if you qualify to take it .
You don't say what causes your back pain, I have severe osteoarthritis in my lower spine and right hip and moderate OA in my left hip all causing pain and I don't take any pain killers other than the occasional paracetamol. With a long term chronic condition I would not want to take pain killers regularly.
I also keep my weight healthy so I don't put extra stain on the deteriorating parts of my body.
With a 8 month wait for NHS physiotherapy I used my savings and saw someone privately who developed a programme of stretching excercise which along with daily walks with a walking pole keep me active and reduce the pain. I have to do the excercise daily without fail, not always easy when I feel so ill with AF but I do them religiously, if I stop for any reason I soon experience problems.
I eventually got to see an NHS phisio who advised the same excercise programme I obtained from the private phisio .
Thank you for your reply. My pain is also from arthritis so I know I need to move around more and I confess I've not done my exercises religiously. You are so right about keeping your weight down - that's another issue I definitely need to tackle! Keep well.
Hello Trent, as all on here say Anti coagulants essential, Bisoprolol can be stopped but advice from your Cardiologist a must.
As far as your back pain is concerned I can only speak to my own experience. I have for many years suffered from disc issues and as I head towards 78 they only deteriorate further with age. I saw a 'Pain Management' specialist in Solihull and her prescribed Tramadol which I have taken for many years. I don't have a problem with becoming addicted on them. They have allowed me to live a fairly normal life, not without episodes of course, but still play golf 3 x times per week.
The inability to take painkillers when on an anticoagulant is something that never occurred to me when I was put on them. Luckily, though, my neck problems have so far not been troublesome but I can imagine how frustrated you feel. I think codeine is one other safe possibility but that always caused me constipation and, in high doses, made me feel strange.
When I read around the issue with NSAID drugs, I did discover that, in AF, the risk of stroke is thought possibly not to come directly from the AF itself, but from small blood clots that form inside a tiny part of the top of the heart, called the atrial appendage. It seems it could even be the individual shape and size of this that increases the risk of stroke. In fact, there's some thought that it might not even be the AF itself that creates risk or the clots so much as the shape of the appendage, with a "cauliflower" shape being the worst for clots.
So, overall, it seems to me that it's not fully clear even to the medical experts what is really happening with AF and its associated stroke risk; but it does seem beyond doubt that a. anticoagulant reduces the risk of stroke substantially. For that reason, I doubt your doctor would agree to your stopping the edoxoban.
It might be worth adding, too, that there's been quite a lot of fairly recent research that counter-intuitively shows that anti-inflammatory drugs such as ibuprofen and naproxen are much less effective (and riskier owing to their haemorrhage side effects) than targeted or even general exercise therapy at reducing pain and increasing mobility in patients with arthritis and similar.
I’m just surprised at how much more doctors still need to find out about the heart. It sometimes seems that the more they look, the more they realise they need to find out.
Thank you for your detailed reply. I think you're right about the exercise therapy; I definitely haven't been moving around enough, other than walking, so I'm going to rectify that! I wish you well.
Hello I do understand your dilemma. I've had AF for 25 years now, been on Apixaban and before that other anticoagulants. I was diagnosed with spinal stenosis before lockdown and it was very difficult to manage the pain. In the end Zapain helped where all the other meds didn't. It took the edge off so to speak. I have had the stenosis operated on , successfully, thank goodness. But now I have knee problems and I know anti inflammatory meds would help, but I cant go there. I would not give up the Apixaban, it's too much of a risk. I do see physiotherapists and I will do what I can, physically, financially and emotionally to resolve my issues, but I know I must not take anti inflammatory drugs. It's a pain in more ways than one. I'm not elderly and I love being active and at the moment swimming is my activity as well as gentle yoga and walking. I dont drink caffeine, hardly ever drink alcohol, try to keep stress at bay, I dont have anything with artificial sweeteners in. It's hard sometimes to know what the triggers are , but all the time I'm having af episodes, and I dont get much rest between them even after 4 ablations, (but that's just me others have had great successes ) I will stay on Apixaban. I dont suppose what I have said helps as we are all so individual but I just want to stress that during my stenosis I was a wheelchair user and I really dont want to go there again and a stroke is not what any of us want.Good luck with your journey.
Thank you for your reply. I'm so sorry to hear about the spinal stenosis. That sounds awful. I know that swimming can help so I'm going to really try to include that in my exercise therapy and I'm going to continue with the Edoxoban as everyone that has replied has said it would be foolish to discontinue it. I wish you well and hope that your AF episodes are few and far between.
Thank you so much. My partner reminded me about a TENS machine I have used. You try so many things 🙄. He suggested Curcumin supplements also (turmeric) , you would have to research if this can be taken with your meds. I really hope you get some relief.
For me that was the worst part of being put on anticoagulants as I have chronic neck and back pain. I did a pain clinic at my local hospital gymnasium and we found a good dose of the best pain killers I could take and life style adjustments to help with my pain. This has worked so well that I am now taking fewer painkillers than I ever have.
It wasn't so much the pain killers but exercises and lifestyle changes, relaxation and "recovery position" which helped the most. The course lasted a week so it was like going to school. the main thing is not to stay in any position for too long - so if you are sitting or standing at a desk get up, stretch and walk around - same when you are sitting down watching TV don't stay in the same position for too long stretch and move around. I also had botox injections into the area around my neck every 6 months for a few years which helped - my spine is out of line there and any sharp movement such as whiplash from a car accident would snap it quite easily - you should see the scans my spine there is like a wonky staircase - no wonder I am 2 inches shorter! The pain killers we just chopped and changed until we found some that worked best co-dydramol and lidocain patches worked best. Take the painkillers on time and regularly I also was prescribed 2 paracetamol 4 times a day which I cut down on now. The lidocain patches at night time were a dream - literally because they took the pain down to a level where I could rest so much better.
Thank you for your reply. I think the advice about not staying in the same position for too long is a valid point. I hadn't heard of Lidocain patches so will investigate those. I hope you are now pain free. Keep well.
I think they studied the effectiveness of anti-coagulants on other causes of strokes like atherosclerosis & they had little effect. Anti-platelets better for some. I guess that may be why anti-coagulants only 65% effective - some people may still have strokes despite taking them as the cause is plaque related rather than a cardiac embolism.
I still do take painkillers while I’m on xarelto and it doesn’t seem to be a problem. Maybe a few extra nosebleeds. As far as “trigger” foods to avoid, in my personal experience nothing seemed to matter except excessive alcohol. Caffeine didn’t seem to matter. Unfortunately afib keeps getting worse. I would highly recommend an ablation before you go into persistent afib which is difficult if not impossible to ablate. Since you were in afib quite some time before cardioversion, it sounds like you’re in your way. I’d push my EP hard for an ablation. Otherwise I’d fine one who will do it. I’ve been dealing with this for over 39 years. Amiodarone is the only thing that works for me. Better to avoid that drug if you can. Good luck.
Thank you for your reply. I agree with you about the alcohol. I think that was what started the October episode as I'd had to have my lovely dog put to sleep and I drank too much wine. I won't be drinking again. I have been offered an ablation but I'll wait and see how things progress as I've had so many procedures/operations in the last few years for unrelated illnesses and I just want to stay away from hospitals for as long as I can! Keep well.
I think you really need to be guided by your specialist and perhaps get a 2nd opinion as well. Perhaps another anticoagulant can be tried. I wouldn't ignore your doctor's advice if he says you need them. There are other pain medications available also. Being able to take Ibuprofen is not worth risking a stroke for!
what kind of doctor are you seeing? A Cardiologist? Have you seen an Electrophysiologist yet? If not then that is the first thing I would do see an EP, they specialize in AFIB. We can’t help with the anti-coagulants that is up to an EP… and ask the EP about an ablation, that would be next… nip this thing in the bud!
Thank you for replying. I'm lucky enough to be under Harefield hospital and have been offered an ablation but I'll wait and see how things progress as I've had so many procedures/operations in the last few years for unrelated illnesses and I just want to stay away from hospitals for as long as I can! Keep well.
makes sense. Just keep in mind the sooner you get the ablation the better your chances of success… there is a saying…”AFIB begets AFIB”…. but certainly always smart to weigh things. Another thought, have you asked about the experience of the EP? How many ablations have they done? Success rate? Experience matters with ablations. Best of luck to you!
I don’t know anyone who enjoys being on anticoagulants. I take them, and I’m grateful that they provide a reduction in risk for stroke. It’s that simple.
As various people have said ibuprufen is not good if you have any heart related issue. With my open heart surgery I was only allowed large doses of paracetemol. I 've found Ibuprufen taken for a couple of days sends me into AF. Ask your GP about better painkillers, I have a codeine /paracetamol prescription
Firstly I have to say I am not advocating stopping anticoagulants however there are a number of studies looking at anticoagulants as a PIP regimen. With the DOACs and efficient monitoring (including whilst asleep) it has been suggested that anticoagulants are only needed in some cases when that person goes into AFib and for a period of time after the episode finishes obviously this wouldn't work with warfarin but the DOACs are very quick acting most of the studies are concluding that more research is needed and of course comorbidities like previous stroke diabetes etc etc need to be taken into account as these can be risk factors for stroke outside of AFib. For me for now I will continue with my apixiban even though the AFib so far is controlled by flecainide as others have said the consequences of stroke can be devastating but in the future there may be a possibility of some patients using anticoagulants as PIP.
I also struggle with the choice to anticoagulate or not. See my Bio where I explain my situation better.
Further to Mcopt's Reply above, here's a current 7 year research project in USA on the PIP approach to anticoagulation, using AF monitoring by Apple watches ... news.northwestern.edu/stori...
... however the results of that trial are years away and older patients need to make choices now.
This older article by Dr John Day also addresses this issue ...
Really interesting articles, thank you so much for sending them. Hopefully 5 years from now PIP DOACs will be the way forward for some people. Keep well.
Yes, but know that I have read reports here from Forum members in USA, Australia, UK, & probably other places, who currently use a PIP approach to anticoagulation with the support of their EP/Cardiologist.
But it's certainly the case that this is not the current medical advice, hence the research study.
Hi, An AFib stroke can occur in less than five minutes and according to my EP is usually devastating.Ask about an ablation or mini maze to try get rid of the AFib. Or ask about a watchman or atrial appendage clip to take away the risk of an AFib stroke.
I have bad back pain, radiating down legs and can't take nsaids. If you continue to take them regularly like I did you'll eventually find your kidneys failing, like I did, and the only fix was no nsaids ever again. A lot of bad back pain is muscle spasm, I use valium for that, it really helps me. Gabapentin helps me with the nerve pain.
You do not want to take a chance with an AFib stroke.
Thank you for your reply. I have stopped taking ibuprofen and I'm going to keep up with my exercises that the physio has given me. I have been offered an ablation but I'll wait and see how things progress as I've had so many procedures/operations in the last few years for unrelated illnesses and I just want to stay away from hospitals for as long as I can! Keep well.
Hi Trent - thank you for your post, I can see some of the Members have already offered advice based upon their own experiences.
I understand your frustration with not being able to use Ibuprofen for pain relief, perhaps contact your GP or a Pharmacist for an alternative medication that is safe to take with the Edoxaban or an alternative method of pain relief?
Upon diagnosis of AF, your ‘CHA2DS2-VASc’ will have been checked as to whether you are at high risk of having an AF-related stroke. If the score is 2+ you are prescribed anticoagulants, as they will help lower that risk.
Unfortunately, Edoxaban and other DOACs are not a medication to be taken on an ad hoc basis as it is quickly administered into the body. The medication is required to be taken daily as it is keeping you protected. You may wish to view some of our patient resources about anticoagulants on our AF Association website: heartrhythmalliance.org/afa...
Alternatively, if you prefer to contact me on 01789 867 502, I am happy to talk this through with you.
Thank you for your reply. I have had lots of advice from the lovely, knowledgeable people on this forum so will definitely be continuing with the Edoxaban.
It has been a great help reading all the posts, new and old, and the patient resources information. I have found out so much about AF and its' treatment since discovering this forum. I am really grateful I found it! Thank you for all you do. Keep well.
I had a very successful visit with my EP yesterday. One year out from 2nd ablation. Doing well, no afib and reducing Diltiazem dosage. Asked if I wanted to come off xarelto. No thanks! Why risk that chance.
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