Edoxaban and dreams and nightmares ...... Part 2

[BenHall1]

Been figuring the best way to write my thanks to you all for your comments on Part 1, so, tryin’ this.

Whilst I have been reading your comments I have also been reading ‘The paper in the packet’ for each of the drugs that I originally referred to. It does seem as though each of these three DOAC's side effects can make a contribution to my experiences to one degree or another.

Although it’s dangerous to generalise I sense a bit of a pattern with your 16 comments. 1st, is - those of us who have been on these DOAC’s since they became available in the market place ( about 3 years ago ) AND 2ND - those of us who started on the forerunners of these DOAC’s ( maybe 10, 15 or longer years ago ) then switched since they have been on the market ( the last say 3 years).

It seems that those who are new to AF and have gone straight onto Atorvastatin, Edoxaban and Nebivolol have little or no problem. Those of us who kicked off with Simvastatin, Warfarin and Bisoprolol, THEN switched in recent years could be candidates for problems.

So when I talk to my Surgery Pharmacist on Tuesday I shall ask to return to Warfarin and dump Edoxaban, I will ask to return to Simvastatin and dump Atorvastatin and finally stay with Bisoprolol but start at 1.25mg and if necessary build up the size of doses. ( When I was originally put on Bisop my dose was 5mg ). When I was put on Nebivolol it was at 3.75mg.

The thing is I went from Jan 2010 to August 2023 on Warfarin, Bisoprolol and Simvastatin without any trouble. From Sept 2023 to March 2024 I was progressively switched to the DOAC's ( as we know them ) and then lurched into all the problems I've discussed 😱😱😱

Thanks everyone, hope you might have learned something from my post as I have from your replies.

John

[Auriculaire]

The DOACs have been around for a lot longer than 3 years John -since about 2010 I think. Why do you take the statin at all? I think going back to Warfarin is a good idea - you were ok on that so why did you change? In my experience Nebivolol has less side effects than Bisoprolol. You say you are no longer getting afib. Have you thought about weaning off the beta blocker completely?

[BenHall1 in reply to Auriculaire]

Hi Auriculaire,

Many thanks.

Jan 2010 was the date I was diagnosed with paroxysmal AF. I am sure that all 4 DOAC's were still in/on the laboratory test bed at that time because I am sure back in those days the only anticoagulant was Warfarin. No references available on HU now and back in the day 2010, HU didn't exist. Yahoo hosted the AF forum back in the day. BobD may have a better recollection.

I was put on Simvastatin in mid 2007 ( 3 years before AF mugged me ) by my then GP as an anti Cholesterol measure. I was then 63. It was all the rage in those days.

On the topic of Warfarin. Historically, my GP has been trying to get me to change for years. I have refused. In the end, because I tripped over our cat and tore the tendon from the left shoulder rotator cuff ( which didn't tickle 😂🐱) She put me on Amitriptyline for pain relief. That was useless ! She then tried Gabapentin- also useless both gave me diahorrea. I told her to keep it, I'll stay with CoCodomol 30/500. Her claim was that Edoxaban and Amitriptyline and Gabapentin worked best together. I decided to work with her but now I am totally fed up with young GP's sucking up to their local and their NHS management with these new drugs .......... totally damn well fed up and I am talking to my Surgery Pharmacist tomorrow and the thrust of this will be to return to Warfarin, Simvastatin - ideally to abandon Bisoprolol altogether but if I have to have it then I'll want a 1.25mg dose.

John😊

[Auriculaire in reply to BenHall1]

You are right about the DOACs still being in clinical trials . I first took an anticoagulant in 2015. I was put on Préviscan an anti vit K like Warfarin but preferred here - God knows why it has far worse side effects. I came off and in 2018 was offered Pradaxa when the beast returned and I had turned 65. Since March 2019 I have taken Apixaban which I hate. You don't have to take anything you don't want to take. I think you might have a fight to get back on Warfarin. I was on 1.25 mg Bisoprolol but was swapped to the same dose of Nebivolol. My cardiologist told me to take extra during an afib episode. I actually only take .65 mg a day though it is fiddly cutting the tablets. I am thinking of stopping altogether. I just don't see the point of beta blockers when you have a low normal heartrate in NSR. They don't keep the afib away for most people anyway.

[Cleegirl1 in reply to Auriculaire]

Well I was on warfarin and went on hols and collapsed, ended up with bleed on the brain and had surgery. They stopped my warfarin and put me on apixaban. I take so many meds on 12.5mgs of bisoprolol. Flecanide and went into hospital in jan and had a fib for over 24 hours and have Paroxal a fib and put me in digixon a very old meds and I’m on atorvastin. Told me I’ve got heart failure and waiting for a consultation for emphysema. So so much going on.

[Auriculaire in reply to Cleegirl1]

Heart failure sounds bad but often it just means that your heart is not working as well as it should. It can be improved with the right treatment. I felt like death warmed up on 5mg of Bisoprolol. No way could I take 12.5mg! There is a supplement called n acetyl cysteine (NAC )which is very good for lung function. It does have some blood thinning effect though hard to say how much so with your past history probably not suitable alongside Apixaban. I hope you can get sorted out.

[BenHall1 in reply to Cleegirl1]

Love your picture of the Rainbow Lorikeet ... reminds me of my old life in a galaxy far away in Sydney. Back to the topic .... I guess you have had an Echocardiogram - have you ever been given a left ventricle ejection fraction ? If so what was it ?

Thanks.

John

[BenHall1 in reply to Auriculaire]

Well I spoke to the Pharmacist this morning who carefully listened to my 'moans'. Outcome - come off all statins immediately and stay off them for 2 weeks. On 10 April I have to report for a full range blood test ....... with a particular focus on Thyroid. Y'know, to the best of my knowledge I have never had a Thyroid test ... ever! Unless it was done when I was first diagnosed with AF in Jan 2010 during my 6 day stay in hospital ( I do recall being tested for shedloads of stuff back in the day ). Meanwhile I continue with Nebivolol and Edoxaban. I did tell her of a domestic DIY accident I had recently when I stabbed a finger and blood poured/gushed out of the wound. Far more so than a similar injury I'd had many times when I was on Warfarin. So, I guess I can only say my preference for Warfarin is enhanced because from my humble knowledge you have total control of your anticoagulation by varying your dose of Warfarin - bear in mind I've spent 12 years or more with my own Coaguchek device getting my own INR test result. So, while noting your comments I haven't given up on the change back to Warfarin .... 😱

I have to admit to being very adventurous with Warfarin because I self tested and I also adjusted my own dosage at times according to algorithms I found years ago.

Thanks.

John

[Auriculaire in reply to BenHall1]

Men hardly ever get thyroid tests unless they have symptoms of hyper because hypo is much less common in men. If you feel better off the statin that will be a result.

[BenHall1 in reply to Auriculaire]

Thanks. Looks like I'm walking into a new world. I think Thyroid is a waste of time, anyhow, we'll see in a couple of weeks.