Hello everyone -be grateful for your thoughts/ experiences on the following.
I was diagnosed with P-Atrial Fibulation three years ago and put on Riveroxaban. Score was 2.5 for a stroke. My P-Afib is a consequence of sucessful cancer treatment. At first the blood thinner was fine but after a while it caused a lot of bleeding from teeth, bowels and lungs....this happened during lock down. Ended up coming off the the blood thinner. Bleeding stopped within 24hrs of not taking it and I was fine.
EP concerned by risk of stroke so recently went back on a different blood thinner -Apixaban. I have been fine but now after a month on it am noticing the bleeding issue starting to come back so far with mouth only. Am keeping going with the Apixaban. I dont want a stroke! Its not too bad at the mo but I am concerned. My EP says if I cant tolerate the blood thinners than an op is the other route. Has anyone any suggestions or know about the op or have had it? Am not sure what to do!
Many thanks.
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waveylines
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Thanks for your comments on codeine. Will investigate. CoCodomol was prescribed as a pain relief mechanism when I was originally put on Warfarin.
Now for your query ...... I think what you are referring to is a device known as The Watchman. Google it and read up. I thinkI recall Imperial college London being involved.
If Watchman is the procedure and if you cannot tolerate anticoagulants then you may not have a choice.... except to decide a date or have a stroke.
Thanks John. The EP said Leeds hospital do the procedure. Thanks for the info. I should also the risk of stroke for me is pretty low at the moment at 2.5 but obviously this will increase with time so a solution needs to be found.
Hope you get sorted re pain relief so your BP settles etc.... wish they could resolve the source of your pain. Unrelenting pain is awful to live with.
Have you discussed the possibility of a slight reduction in the dose of anticoagulant? The one size fits all prescribing does not often "fit" everybody . I remember reading on here not long ago a post from someone who took a half tab of Apixaban 3 times a day with the ok of his/her EP.
Thankyou CDreamer.....Brill. Will.look at the link. Hoping someone will post whose had it. Bit scared of having it tbh so hoping it won't come to that. 🤞
Also known as Left atrial appendage occlusion (LAAO). Lots of helpful information if you Google it!
Hi waveylines, I only recently saw a video about the op/device you may be referring to, which is the insertion of a small device into your heart, to prevent any blood clots which form from escaping into your blood vessels.
Fiirstly anticoagulants do not thin blood, they merely reduce the ability to clot so there must be reasons for the bleeding which will be more noticable. Teeth only bleed due to gum disease which most of us have to some extent or another. I suggest that you see a good dental hygienist on a regular basis.
CDreamer has posted regarding the Watchman device and there is another similar one the name of which I can't remember but is something like ampulet?.
Sorry Bob.....I have fallen fowl before of the inaccurate description of blood thinners. Difficult when the professionals use that terminology- both GP and EP refer to the anti coagulation as blood thinners too! Wish you'd tell them off! 🤣😂You are right re underlying causes. I do have an inherited disposition to gingervitus. To be pedantic its not really gum disease and I shouldn't call it that either. I am seen regularly by a dentist. It is well managed and I wasnt bleeding at all prior to the anti coagulation. However when on an anticoagulant the bleeding started and was so profuse my mouth/teeth hurt....not a good look when you smile either! 😂.There is nothing more that can be done to stop it they have told me. It all resolved once anti coagulation stopped but now back on the bleeding is starting up again despite rigorous through cleaning and using a strong mouth wash.
I am under a lung specialist and have been thoroughly checked and I do have a good size tumour in my lung that is currently inactive thankfully but now annually checked. They think the anticoagulant must have affected the vessels in the tumour causing it to bleed exacerbated further by coughing.......dont know the technicalities so please don't pick me up on this one. 🙏 The bowel bleeding also had an underlying cause stage 5 heamerroids resolved by me deciding to go gluten free (for other symptoms)......the bowel specialist was well impressed by the massive improvement - now tiny and told me going gluten free can indeed have this effect and wrote it in his letter to the GP. So hoping that the bleeding won't recur.
The overall bleeding was not minor in its quantities as I would have ignored it if it had been. At the time GPfast tracked me twice in one week.
So yes you are correct there are underlying conditions which I cant do anything further to ammeliorate sadly. So either I live with the bleeding, have a stroke or have the procedure.....not sure which name to call it.
My EP was very sympathetic and mentioned this procedure. He wrote it in his letter to the GP. Sadly am in the middle of a big extension so have mislaid the letter.
I was just wanting to know more about it and peoples experiences of it incase I too have to walk that route. Thanks
Thanks Butterfly. Seems to be more than one device. The Watchman is available in the uk for definate. Dont know about others. Think I need to seek medical advice on which would be most suitable if I have to. Be good to hear from anyone whose had a device fitted. Think I might ring the National Heart Foundation & see what info their nurses have.
Thanks Espeegee. Id rather take anti coagulation than have the op tbh but this is my second try at them & I may not have a choice. Dont like the idea of my heart being meddled with. I think most people r fine on the meds......
Its not a faulty valve Ive had all the scans. Mine is due to chemo and radiotherapy.
Thank you Espeegee. Am good really. My GP says my notes read like some dire case but I look surprisingly well!! 🤣😅 In truth am soooo lucky to be here and in remission so every bit of time I have is an extra..... and it is all thanx to the NHS.
I had the op at St Bart's a couple of years ago, as unable to take anticoagulants. I was referred on the NHS for a Watchman device but during the procedure the consultant decided to use an Amplatzer amulet device as it was a better fit in my case. I've not had any problems with it, and feel a bit more reassured regarding a stroke. The reason I can't take anticoagulants is that I also have cerebral Cavernoma which is malformed blood vessels in the brain which can also cause a stroke so a bit like being between a rock and a hard place. At least my AF isn't too problematic so feeling pretty good at the moment. Plenty of info on the web regarding the op but not sure if the NHS are still doing it.
There has been some critical comments on the Watchman device due to the high rate of clots formed from the device itself, e.g.: johnmandrola.substack.com/p...
Also the adverse cases seem to be twice as high in women:
You could try warfarin as it works by a completely different action from the DOACs. Many of us use this anticoagulant very effectively on this board. If you do, I would highly recommend getting a Coaguchek monitor. You can use this to ensure the warfarin is at optimum effectiveness. This is not possible with the DOACs.
Maybe spend more time with advice as necessary to better define your stroke risk. All the while you postpone taking anti-coags, the other option of a heart procedure improve through medical advances even if only over a couple of years.
Hello secondtry. My stroke risk is currently 2.5 - low for a woman as usually start anti coagulation over 3. However EP wants me on it now. Let's hope more options come on board. However with the pandemic most research has been centred, understandably, on Covid19.
I'm on apixaban and I tend to bleed longer if I cut a finger etc - I also failed a colorectal cancer test with blood in my stools - However the colonoscopy showed nothing except a few fine pictures of my insides. So I'm guessing that the blood was caused by the medication. It may be something else but the doctor that had the pleasure with the endoscope was not concerned I'm glad to say. Have you been tried on a lower dose?
I'm told by the EP and GP a lower dose would cause the anti-coagulant to be ineffective....so thats not possible. I was a bit mystified by this tbh as if I'm bleeding on current dose logically it made sense to lower dose....Marks suggestion of Warfarin is worth asking GP about as that can be adjusted. More complex though.
I am on warfarin as I had an aortic valve replacement three years ago. There is not sufficient clinical evidence that DOACs are effective in preventing blood clots on the artificial valve. I also had my left atrial appendage removed as I have Paroxysmal Atrial Fibrillation. Regular blood tests are a pain with warfarin but mine are currently monthly as my INR has been stable
Hi, just wondering about your comment regarding P-a fib bring due to successful cancer treatment? I was diagnosed a year ago and I’ve always thought it started when I was in breast cancer treatment but doctor said it was just a coincidence. Did they actually say your treatment caused P-a fib?
Sorry to hear you've been through this. Yes they did say it due to treatment. I started with a fast heart rate of 130 at rest half way through my Herceptin treatment plan but was told it was a complication also of chemo and radiotherapy that was done on left breast. I also had left ventricle impairment ( known se of Herceptin) but that repaired after treatment stopped. Heart complications of BC treatment are a recognised complication and many hospitals have a cardiologist specialising in their management. Its called Cardiotoxicity. It can also develop after treatment has been completed, years on in some cases. You shouldve been asked to sign a form which listed all the possible medical consequences of treatment & given a copy?
Hi waveylines. I was given Edoxaban a similar anticoagulant to Epixaban. I have paroxysmal AFib and a heart condition that can create clots. I take 30mg a day as I am just inder 60kg. Any heavier and the dose would be doubled. I did stop a number of supplements however which would possibly increase the likelihood of bleeding, eg St Johns Wort, Turmeric, fish oil, glucosamine and condroitin and garlic tablets and of course no aspirin or any other anti inflammatories. I do put on single use gloves when chopping veg and wear gardening gloves and the like for protection when working outside, I did put off taking anticoagulants for years but decided it was only sensible. I check any possible interactions before starting a supplement. I have taken codeine for years for arthritis in my spine and never found any interaction or seen it listed as a possible. We all have to weigh up the pros and cons of meds and do our research as well. Good luck.
Of course, I'm no medic, but it occurred to me that perhaps your blood is naturally "un-sticky" enough to reduce any chance of a future clotting issue (or needs a much lower dose)? The stroke risk assessment is a very broad and non-specific "test", I would think. I wonder whether your doctor couldn't arrange for some kind of blood test on you?
Thanks Steve, I raised this with GP & EP and they both said that you can't alter the dose as it then wouldn't be effective.....lol. I dont know if Warfarin would be better....
I traveled from my state Minnesota to Texas (USA) August 2020 fir my fourth ablation on my left appendage- I remain in NSR and just had a touch up ablation along with the Watchman procedure in June 2021. I now am on reduced Anticoagulant Xarelto and low dose aspirin. At six months I should be reduced to low dose aspirin. I am monitored with an Esophageal TEE test for one year. I am doing well
When I went on Apixaban I too had mouth bleeding from gums. Someone suggested going to dental hygienes which i did. I had three visits and now I look after my teeth and gums as suggested and I rarely get bleeding now. Before taking blood thinners I had very healthy gums and never bled
I hear what u say....I do have inherited gingervitus but this was all under complete control till started taking anti coagulants. Now am on a loosing battle but trying hard!
Awe just wondered about the gums, as I’ve had it. Re Apixaban I get scratched a four but from cat and it’s no different to if I wasn’t in tablets as far as I can tell
Hi. I understand about the bleeding gums. I wake up most mornings with stale blood in my mouth. My gums are healthy so it's likely I grind my teeth when asleep. I have always had a tendency to bleeding gums when I brushed my teeth but that was only minor. Am just accepting this is one of the side effects described in the Rivaroxaban leaflet.
Hi BRHow -it was gums, blood from lungs and bowels so came off anticoagulant and it all stopped within 24hrs. Now some gum bleeding but not loads this time round - last time it was a lot and my mouth, teeth hurt. I brush & floss twice daily and swill Corsodyl as instructed by dentist. Dentist seeing me regularly. Am hoping nothing else will bleed 🤞🤞 as I dont want to go down the device route.
I am having similar problems. They of course are working it up. Many appointments. Wish these folks could get coordinated. Warfarin probably not answer. I'm on Xarelto and Aspirin. I feel that I'm bleeding and please continue Xarelto? My hemoglobin is half normal and I can do little around house. With Delta raging in our area beds are at a premium. All this could not have come at a worse time. One time they talked about ablation.Hope you get a treatment plan that works for you. Hoping the same for myself. Got to have faith I guess.
Oh Efiejean so sorry to hear what you are going through. Sorry to hear about the Delta.....& am sure you dont want to be near that whilst its kicking off! Really hope they find a solution for you. Xx
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