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Others' experience of Edoxaban and side effect of ongoing bleeding, swollen gums behind front teeth? Treatments? Alternative DOACS? Try?

HastyHeart profile image
18 Replies

Change from Warfarin to Edoxaban, then experiencing a bad bleed after bowel polypectomy by colonoscopy.

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HastyHeart
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18 Replies
BobD profile image
BobDVolunteer

Sorry to say (I'm sure you already know) that gums do not bleed unless you have gum disease. I'd see your dental hygienist first if I were you.

HastyHeart profile image
HastyHeart in reply to BobD

Yes, thank you BobD, I did know that. But in all the years I was taking Warfarin my gums were never swollen or bled as when I changed to Edoxaban on Dec 8th 2021 after the first colonoscopy. Please see my updated profile. I went to the dentist 26th Jan with the problem but the next morning had the heavy bowel bleeding and came off Edoxaban for over 2 weeks, when gums started improving, until I restarted it on 11th Feb when the gums started getting sore, swollen and bleeding again very soon afterwards. Visited dentist again last week 28th, had scale and polish, and advice. No improvement as yet. Maybe expecting too much too soon! Have an upper dental plate which I find protects my sore gums when eating.

BobD profile image
BobDVolunteer in reply to HastyHeart

Sympathies. I'm on antibiotics at present as the poor old peg that supports my top plate is V sore. Teach me to eat a bacon sandwich and not straight away go clean my teeth!

There is a condition called lichen planus which can be caused by heart medication,I have it,there is no cure as such ,but I now only brush teeth gently and this has stopped the soreness and bleeding. My dentist checks on it regularly,so hope this helps you.

HastyHeart profile image
HastyHeart in reply to

Thank you Bobbyalan for your VERY helpful reply. I have had lichen planus/Sclerosis for over 30 years in a "delicate" area which is well managed by steroid ointment when it flares up. I was aware that lichen planus can affect the mouth too but had forgotten, until your post. I have bought more gentle toothbrush heads for my electric toothbrush, special floss for bleeding gums, revived my ancient Waterpick (but using that seems to make my gums bleed even more!) and use Corsodyl toothpaste not rinsed off, as well as warm saltwater rinses through the day - all advised by dentist. Told by GP pharmacist to persevere with Edoxaban till after next colonoscopy in April to remove remaining 8 polyps, then maybe revue. Wearing my small upper dental plate with just 3 side teeth on seems to protect the gums at the back of front teeth when eating. Otherwise I leave it out. Wish I could just stop taking Edoxaban but daren't as I have permanent AF!

pusillanimous profile image
pusillanimous in reply to

Don't you see the lesions from the lichen planus - usually they are very visible in the mouth?

in reply to pusillanimous

Not always,depends on the severity, my gums are just red,and sore sometimes.

HastyHeart profile image
HastyHeart in reply to pusillanimous

I don't have any lesions in the mouth. And my gums aren't inflamed, just swollen, sore from biting on the swelling behind the front teeth, and some purple at the teeth joining edges of the gum swellings. All this started ONLY after I started on Edoxaban on Dec 8th, when I had to stop it for two weeks after my bowel bleed in January, my gums improved almost back to normal. But within a few days of restarting Edoxaban on 11th Feb, my gums in that same place ONLY started swelling and bleeding. Still continuing despite frequent warm salty mouthwashing, and using Cordasyl toothpaste twice a day without rinsing. I KNOW what's causing it - Edoxaban - and it's good to read from Turquoise 19 that it's possible to not have side effects, Thankyou. But how long do I wait, anxiously, to see if this side effect wears off? I'm 78 and don't want to lose my precious front teeth to something avoidable.

pusillanimous profile image
pusillanimous in reply to HastyHeart

Has your doctor not suggested trying on e of the other anti-coagulants?

HastyHeart profile image
HastyHeart in reply to pusillanimous

Never seen GP! All conversations relating to anticoagulant are now with GP Practice Pharmacists. I think they favour Rivaroxaban or Apixaban. I was persuaded to have Rivaroxaban briefly a few years ago when I was actually in AF in consultation with a GP and he discovered I was on aspririn. Wouldn't let me leave surgery without an alternative anticoagulant but couldn't give me his preferred choice of Warfarin without INR being tested first, and as I was going away on holiday soon, he put me on Rivaroxaban, he said TEMPORARILY, and he would arrange for me to go to INR clinic when I came home. Reason: Warfarin was "tried and tested. New NOACS were not." I read up on everything and asked local pharmacist about staying on Rivaroxaban and he said I had a right to, and could insist. I was ok on Rivaroxaban except for "runs" a few odd evenings after evening meal. However, GP not wanting me to stay on it, but go on Warfarin. I challenged him that the real reason was cost. Warfarin cheap! NOACS not! He admitted that was so. In those days I was scared of upsetting GPs in practice to my possible detriment and reluctantly went on Warfarin. I was stable 90% of the time - NEVER any problems with gums bleeding or swollen. Testing was more of a faff with Covid restrictions, queues and longer waits at hospital clinic. And only asked to change to NOAC after first colonoscopy last Nov. I researched online, didn't fancy having to take Apixaban or Dabigatran twice a day, or Rivaroxaban with risk of "runs" again, so went for Edoxaban. Now have asked GP pharmacist about going back on Warfarin or what alternative? Told to keep on Edoxaban uptil next (3rd) colonoscopy to remove last 8 polyps in April , then review. Not happy but feel powerless - fear internal bleed again, and possible nosebleeds on a different anticoagulant. Seems problems with ALL of them and just luck of the draw! Sorry this is so long-winded.

Thank you.

pusillanimous profile image
pusillanimous in reply to HastyHeart

It must be difficult for you. I live in South Africa where most of the medical treatment is private, so the patient has a say and is able to vote with her feet. Those of us who can afford it belong to Medical Aid Societies (these operate quite differently from medical Insurance) At first the Cardio put me on Warfarin because he thought the Med Aid would not pay for the new anti-coagulants. I was put off warfarin when my pharmacist saw my prescription and turned up his nose and said 'that was the first rodenticide' so I negotiated with my Med. Aid that if I paid part of the cost of Xarelto, could I have that. They agreed and 4 years later I still take it with no problems. I make sure I have it with my evening meal and it suits me very well. Giving the blood samples for Warfarin is easy here, the Path labs are private and most have a receiving depot next to the doctors rooms, so you just need to pop in there and give blood. I really would give the Rivaroxaban another try. Maybe a break from the chlorhexidine mouthwash for a while would help your mouth,

HastyHeart profile image
HastyHeart in reply to pusillanimous

Thank you for your reply yesterday. I researched Rivaroxaban again last evening BUT I am alarmed to read among the top side effects are: bleeding gums, and worse still for me, nosebleeds. I am terrified of having the latter, Experienced it in the past from overuse of steroid nasal sprays and ended up in A&E, had the bleed cold-cauterised, which worked - fingers crossed - I've been alright ever since. And I was indeed on Warfarin then. Will try and stick it out on the Edoxaban for a few weeks longer, and even until mid April when next and hopefully final removal of last 8 polyps will be carried out. Feels like if I changed to Rivaroxaban right now, I may be jumping into the same situation.

pusillanimous profile image
pusillanimous in reply to HastyHeart

We seem to have become penfriends!. All my sisters (I have 4) and they are all in the UK (I left when I married a SA resident) but one always suffered from nose bleeds - she is older than me and I recall them when we were young,and they continued in adulthood and she had the same treatment as you - in later years she was diagnosed with Afib and prescribed Xarelto, if its any consolation , she has not suffered nose bleeds since !

HastyHeart profile image
HastyHeart in reply to pusillanimous

Thank you, I'll bear that one in mind if I can't cope with Edoxaban's particular side-effect on me any longer, and my front teeth start dropping out!!

Poor you. This AF is a pain in the bum ! Keep smiling 😊

Polski profile image
Polski

Taking the supplement CoQ10 , and eating lots of fruit and vegetables, are all supposed to improve gum health.

Turquoise19 profile image
Turquoise19

I've been taking edoxaban x5 years now N been fine. Never touched wayfarin.

TracyAdmin profile image
TracyAdminPartner

Thank you for your post, if you would like any support or information about anticoagulants, then please do not hesitate to contact me. You may find some of our patient resources and HCP videos helpful on the AF Association webpage. heartrhythmalliance.org/afa/uk

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