Hello everyone,
Is anyone out there on edoxaban? I was told yesterday at my appointment (didn't see my EP) that this one is now the NOAC they prescribe. I'd never heard of it and not much information about it on the internet.
Thought I would ask all you learned people out there.
Thanks
Vee
heartrhythmalliance.org/fil...
This is a link to a factsheet on the main AF website. Hope it is useful.
Thank you. I did look on main AFA website but didn't find that. I see they use the phrase edoxaban "thins your blood".
Yes I know! I have given up on that battle. Probably why they never send me anything to proof read these days. ha ha. I still think it is patronising as if we don't understand anticoagulant.
I find the layout somewhat confusing - look under For Patients and Patient Resources. Thins the blood - perhaps it's a matter of 'can't beat them, join them'. 🙂
Hi, did you 'go with' Edoxaban? I am going that NOAC route and given the option of choosing any of the four. I was going for Apixaban but this newer one is now an option and has a low bleed risk like Apixaban but just 1 per day. If you are on Edoxaban how is it, probably still early days. Thanks
nice.org.uk/guidance/ta355/...
Seems to depend on your medical history?
Hi Vee T
I understand your confusion, and my personal opinion is that the adopted drug of preference, for GPs especially, is the one they understand or have recently been updated on. In my surgery it's rivaroxyban or nothing, they refuse to prescribe any of the others.
This is an interesting link to a presentation made at a heart conference in Dec 2015
2015.icimeeting.com/wp-cont...
However even with this I would find it hard to know which one to choose. Edoxaban is the newest only having been approved last year I think. I would simply ask why this NOAC and not any of the others
Be well
Ian
Thanks Ian, read it now. Interesting article even though edoxaban not mentioned in some of the comparisons because, as you say, it's the most recent one.
My EP said was the best one for me as I have previously had a clot in the LAA. He wants a TOE after 3 mths
Thanks Barb1, I've never had a clot so can't be for that reason in my case. Did you have any side effects when you started taking it? Were you on warfarin before that?
I was on Warfarin, then Dabigatran and then Warfarin before my last ablation. I have been on Edoxaban with no side effects for 3 months now but have not been able to have the TOE yet, as I have an infection in my artificial hip joint wound. The only downside that I have encountered is medics wanting to treat it like Warfarin instead of knowing that it is in and out of your system within 24 hrs. One nurse asked me what my last INR was! Frightening.
Off the Record
I too have been prescribed Edoxaban and have found it is perhaps causing anaemia. I have taken 76 so far, one daily, and am about to make an appointment to have further discussion with my GP. I know she was prescribing on the instructions of the practice pharmacist, but the local pharmacy (different) hadn't used it before , it is new, and the arrhythmia nurse also said ...We don't use that here...at the renowned Heart Unit I am seeing.
I suspect cost? But haven't compared. None of the conditions Nice refer to apply to me! I am asymptomatic, 65, no previous knowledge of this affliction, no attacks , no co morbidity.
I think I have given it a reasonable trial and it has impacted my quality of life negatively. Despite all my efforts to increase exercise etc I find I am very tired and achy all the time, and a noted side effect of edoxaban is anaemia. (No other side effects I am aware of which is why I didn't discuss this before now.)
I take no other medication at all. The mental leap for me to take this when I seemed very well was extremely challenging , but I do have an enlarged left atrium and a slightly leaky mitral valve it seems after echocardiogram .
I was helped by the local pharmacist who told me that the NOAC s had all been in use in the USA for significant periods and so we're well tried and tested.
The learning curve since my AF was discovered accidentally at a blood pressure test had been another challenge. I may add that my resting heart rate is low, normally 63 by my Fitbit, which is a guideline not an accurate marker.
Best wishes VeeT
Thank you Off the Record. That's really interesting. I've been on warfarin since I was diagnosed about three & a half years ago and very keen to move to a NOAC so I won't have to make that mental leap you've had to make.
Good luck with your appointment.
Best wishes
Correction V tee, it was early. I've taken 56, 2 packs, and none of the criteria in the NICE guidelines apply to me. To be continued....
Mickey 16 s reply is encouraging . I try to keep to a vegetarian diet which may be significant, and may need adjusting.
Hi - I have been taking Edaxoban for a year. Was taking Warfarin for 2 1/2 years before that. Warfarin levels were yo-yoing and did not suit me at all. Have to speak as I find, and so far I have had no problems at all to date with Edaxoban, and feel so much better.
Regards,
Mickey16
Hi Vee,
I have been keen to find a NOAC drug that works for me. I took Edoxaban for around two months and I found that it made my hair fall out quite noticeable - hair left in the bath and when I combed or brushed the hair left behind was very much more than usual. Apparently I discovered, that this is now becoming a known side effect of Edoxaban it doesn't necessarily have the same effect on everyone so you should give it a try. There were no other side effects and it is so much more convenient and easy to use than Warfarin.
There three four NOAC drugs for you choose from should Edoxaban not suit you. I am now taking Rivaroxaban and my hair is no longer falling out but I read from other reports that hair loss has been reported as side effect of this drug also but that hasn't happenened for me. Maybe try Edoxaban for a couple months and see how suits you as - I think it's a good drug. I hope things works out well for you.
Warm Regards,
Ruthypegs
Thank you Ruthypegs, I would be very worried if edoxaban affected me in that way. I already have very fine hair. I guess we all suffer different side effects just as we all suffer different symptoms in AF. I'm pleased to hear you don't suffer side effects with rivaroxaban. All trial and error.
Best wishes, Vee
I have had hair loss with Rivaroxaban as in hair falling out but it seems it is replaced which is why I can't seem to grow my fringe out! So not going bald......
Hi again VeeT, happy to say that , thus far, hair loss has not been a side effect for me, and I have long fine hair. I would be most unhappy if it were to be. We are so individually affected by ...everything ...aren't we? Thanks for raising this,really useful discussion..
Thank you Offtherecord, it's been really useful for me. As I said at the beginning on my first post, I knew nothing about edoxaban and I've had all these really helpful responses. What a great forum.
Vee
Hi, did you 'go with' Edoxaban? I am going that NOAC route and given the option of choosing any of the four. I was going for Apixaban but this newer one is now an option and has a low bleed risk like Apixaban but just 1 per day. If you are on Edoxaban how is it, probably still early days. Thanks
Hi, I haven't made the change over yet as I was told I'd have to wait until after I had a loop recorder implanted in my chest. They wanted me to stay on warfarin until that was done. The procedure was cancelled once because my INR was too high but I had it done on Friday. Will now push for move to Edoxaban.
Thanks, looks like I will be on it this week or next........let you know how it goes
Yes please I'd be really interested to know. I'm off to surgery on Wednesday for INR and to see if consultant has sent letter to surgery about changing to Edoxaban. I asked to be sent a copy too but haven't had one. It could be he was waiting until after the implant was in place.
I've got my Edoxaban. No warfarin for 2 days, then on Sat start 60mg of the Edoxaban. Got the nurse's direct number in case of any issues with it, may have some initial gastric type or diarrhea type problems that go away when body used to it. The hospital pharmacy out of the 60mg tablets as they said the hospital is prescribing this drug a lot. So having to take 2x30mg once a day. Let you know how it goes. How did it go at the surgery?
That's great news you're making the move over to Edoxaban. Had blood taken for INR but it's a slow process. The sample is then sent to anticoagulation clinic who will send me the result by post, probably get it tomorrow. Go on 14th February to get implant checked out and if everything is OK hopefully I'll be on Edoxaban soon too.
I just this minute took my first Edoxaban 60 mg. I have been on Xarelto 20 mg for about a year but had many issues etc. edema in left calf with an itchy rash which is driving me insane. Legs feel like concrete blocks by mid afternoon, joint and muscle pain, making it difficult to exercise and nausea in the beginning which I resolved by taking it with dinner. My Cardioligist/EP wants me to try Edoxaban as supposedly it is better tolerated. We will see what happens.
Hello SweetAdelyn
I can't understand why my post says two years ago as it's just one year ago that I changed to Edoxaban. I'm due my one year checkup. I've been absolutely fine on it. It's so great not to have to think about diet restrictions. My only blip was when I took two tablets in error! Good luck with it and hope you have no side effects.
Best wishes
VeeT
He VeeT,
Apologies for my belated reply, I am pleased to see you got some very helpful advice. .I was given Warferin hospital when I was first diagnosed with AF. I had no idea it caused hai r loss and it took month for me to notice how much hair was in my comb. I immediately changed to the one of.the NOAC drugs, which very new then (five years ago) . My hair still fell out although less than with Warferin. . I trialed each of the available four alternatives and the only one gave no hair loss for me was Apixiban. I do have a feeling that the quality my hair is not the same it feels a bit thinner but that be down to time passing. I know we all different but if you have found a better alternative do let me know. Kind regards Ruthypegs.
Edoxaban or Apixaban
Edoxaban
Edoxaban v. Apixaban 
Edoxaban switch 
