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worse discomfort on edoxaban

femalegannet profile image
13 Replies

Hi ,

I'm new to forum and AF, I'm about 3 weeks into my first box og Edoxaban and I also have been wondering whether its causing my discomfort to be worse.

I've had both osteoarthritis and inflammatory arthritis for more than 10 years and am feeling more uncomfortable, paticularly at night which is affecting my sleep.

Painkillers increased and am planning on giving it a little more time before mentioning to gp or Rheumy.

B

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femalegannet
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13 Replies
MrsSuzuki profile image
MrsSuzuki

My arthritis has got a lot worse now since my last post. I've been on Edoxaban for 7 months now and am finding it very painful and hard to walk sometimes with my knees much worse.I went to the doctor a couple of months ago who said it's osteoarthritis and not Edoxaban, especially because it's not on the list of side effects 😡.

I'm frightened of not taking Edoxaban because of stroke risk, but would love the GP to agree I can stop it for a few weeks to see if it gets any better. I'm going again to see the GP tomorrow and let you know what she says. Maybe warfarin is the answer, but a female member on here is losing her hair in clumps. It's a worry for me.

Lily

Peony4575 profile image
Peony4575

I am on Edoxaban without side effect . I have some osteoarthritis. Logically can’t see why it would affect arthritis. The pattern with arthritis as you know is flare and settle down rinse and repeat, may be a coincidence rather than a cause . Ask the question of your medical team if you are worried

Ppiman profile image
Ppiman

The trouble with all chronic conditions is that they wax and wane and it's easy to blame things that might well be innocent of being the cause (or equally to sing the praises of this or that...). Your idea to stop the edoxaban and see what happens would be something I would think about but then we are stymied by the risk, as you say. That said, I had to stop my apixaban earlier in the year for maybe five weeks all told for a small procedure I had done on of all things a haemorrhoid and the doctor didn't blink at the risk.

Steve

2learn profile image
2learn in reply toPpiman

Hi, My arthritis doesn't wax and wane its pretty much 24/7. The only thing that varies is how much pain I can tolerate and has been worse since I've been on apixaban, never seemed the same problem when on warfarin. Apixaban says one of side effects is joint pain, so presumably that will make osteoarthritis worse, don't know about edoxaban.

Ppiman profile image
Ppiman in reply to2learn

They’re very similar in action, so I think you’ve likely found the culprit. Oh dear. I feel for you in pain always. My mother had the same. Mind you, my own IBS and back troubles are hard going but not in the same league, of course.

Steve

2learn profile image
2learn in reply toPpiman

Hi, IBS and back are pretty discomforting. My arithritis is most main joints, shoulders, elbows, knees and spine. Doc's solution is take more painkillers, but that would mean sometimes taking them 24/7 which seems not a good idea, so I use ice or just tryto ignore it, but its draining. I asked to go back to warfarin but because I've had a small stroke they say apixaban is better for me.

Ppiman profile image
Ppiman in reply to2learn

I'm surprised to read that the newer "DOAC"s are better than warfarin, at least, that wasn't shown in some trials I looked at a good while back.

Bad luck, though - pain is draining and painkillers never too effective.

Steve

Auriculaire profile image
Auriculaire

I am on Apixaban and it definitely increases my joint pain. I discovered this when I was taken off for my first hip op. Altogether I was off about 10days (I had bridging Lovenox jabs). The pain in my hips a d spine improved . Since then I have experimented with the dose and found that it was not a coincidence.

MKG50 profile image
MKG50

I took Edoxoban after I had my first and only episode of Afib last November. After a few weeks I began to get really bad muscle and joint pain, especially in my legs. At one stage I found it difficult to even walk. I changed to Apixaban and the same thing happened. Infact I developed a very painful and swollen right knee which made me cry with pain. My GP said osteoarthritis but I had not had any pain there before. An Xray showed a good knee with no arthritis and no sign of injury. My EP agreed that it certainly sounded like Apixaban and that it is an uncommon but known side effect. He has agreed with me a 2 month break from taking it. Luckily my risk score for stroke is only 2 and I think it's worth the risk. He wants me to monitor any improvements, if any, and let him know in 2 months.Third day off and my pain has decreased and movement is easier. Many people can tolerate DOACs but some of us can't. It will be interesting to see how long it will take to get back to normal. It caused a lot of digestive issues for me too. Also not so bad today.

My EP did say that Dabigatran works in a slightly different way and may be a better choice.

Could you perhaps try that ?

Good luck. I can only empathise.

Countrydweller2 profile image
Countrydweller2 in reply toMKG50

I'm on dabigatran, the last of choices. and I am scared to read it has caused over 250 deaths by damaging hearts. Apixaban didn't cause arthritc pain for me but Xarelto did, and a friend had a stroke while taking xarelto.

MrsSuzuki profile image
MrsSuzuki

Well I saw the GP today and she's another one who thinks it's all a coincidence, as does the pharmacist at the surgery. My GP wouldn't hear of my suggestion to try warfarin, saying the new DOAC's are much better. She did say to try Apixaban and I said I would think about it, so I will stick with Edoxaban for now and see how it goes. Unfortunately my risk score for stroke is 3 so I wouldn't take that risk of stopping for a while and have a break.

Lily

femalegannet profile image
femalegannet

thanks all for the comments, it’s helpful I’m almost sure the the cause of the worsening issues

I’m giving it another couple of weeks before I see gp. Bad timing though as I’m having a few days ‘walking’ with family and it’s curtailing my adventures such as they are!

Thomas45 profile image
Thomas45

When I was put on Warfarin my INR wouldn't settle, because I had an erratic diet. My GPs run several practices and their anticoagulant of choice was Rivaroxaban. I was told they had 800 patients on it, with no problems. I started it and immediately had severe pains throughout my body, except, thankfully, in my head. After 12 days I stopped taking it. The pains continued. I was offered any coagulant and chose to go back to Warfarin. I bought my own INR testing meter, and soon my INR stayed in the range required

A word not used these days is "cripple", but that's exactly how I felt. I needed a stick to help me to walk. I could not stand up from sitting down. I was in constant pain. Subsequently I had a series of blood tests, while being put on high doses of co-codamol which hardly touched the pain. After 5 weeks of tests a GP rang me and asked me to go for another blood test, that day. I did and next morning I was phoned up with the news that they'd found the cause of my pain. I had the auto-immune condition of Polymyalgia Rheumatica. I was prescribed a very slowly reducing dose of prednisolone. It took away the pain and stiffness. It took 4 years to reduce from 30mg to 0mg.

A couple of years ago the arrhythmia nurse changed. She wanted me off Warfarin and on a DOAC. I told her if my experience with a DOAC, and that I would remain with Warfarin.

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