An Experiment! Update

[WendyWu20]

Hi all. Well it's been a month now, since I gave up all my meds. Apixaban and Flecainide.

I was getting very concerned that my heart was getting so much worse with almost continual acrobatics and discomfort, it was a vicious cycle of palpitations (oh no, I'm going into AF any minute) better take another flecainide... more palpitations and tachycardia etc.

I am extremely happy to report that for the past month I have only had a few minutes of palpitations every few days and no episodes of AF. Despite undergoing experiences that have put me in AF previously...lots of gardening and chores involving bending forwards, long choir rehearsals involving energetic choreography, and a fortnight long flu bug!

I'm also very happy that I've been able to take supplements that were previously contraindicated with the meds... garlic, black seed oil (nigella sativa), olive leaf extract. My hair is starting to grow back (the Apixaban made it fall out) and I've had quite a few comments from people saying that I'm looking too young and must either have a lover (!!!) or be doing magic hahahaha.

Well for now I'm happy. We'll see how things go :o)

Love to all xxx

[WendyWu20]

As always, I want to add that I'm not recommending that anyone gives up their meds! I always take full responsibility for my health :o)

[Hidden]

Interesting Wendy. I know of others who have done much the same and have posted good reports. I don’t want to be a party pooper but depending on your CHADs score, stopping the anticoagulant might be a risk too far. Clearly you know your own mind, but significantly increasing the risk of having a debilitating, life changing stroke would be devastating for you and your family......and not much help for your phantom lover either....🥴

[secondtry in reply to Hidden]

I am currently wrestling with whether I start anticoags as past 65 with one co-morbidity Factor V Leiden and my annual cardiologist check up is this month. I want to be responsible but I cannot recall seeing any convincing statistics. The one that always sticks in my mind is x5 more likely to have a stroke without ACs. However if my chances are anything over 1 in 500 I would prefer not to take them yet, particularly as I read a post recently that mentioned a brain bleed is harder to deal with than a clot.

PS I am putting together a 'stroke box' for my partner to open, tests for me to do to check it is a stroke, our nearest hospital with a proper stroke unit and what I should take immediately before going to hospital.

[Hidden in reply to secondtry]

Having worked with stroke victims I am probably biased secondtry but I make no apologies for that. No matter how hard you try to prepare for something none of us want to happen, strokes do not happen to order and the consequences can be truly life changing. Whilst it's true we get occasional posts from folk who talk about odd problems they may have with anticoagulants, when you consider how many millions of people there are who take it, the problems seem to be minor compared with having a stroke. Of course there are things to consider but fortunately very few opt to take the risk. If you are looking for convincing statistics, why not consider how many £billions the hard strapped NHS are prepared to spend on prescribing and monitoring anticoagulants...….

[secondtry in reply to Hidden]

Point taken!

[wilsond]

I am glad you feel so much better.I too have given up on flecanide and bisoprolol as a daily dose,with my doctors knowledge.Howver i am not keen on giving up the apixaban as I am at least a Chad 2 and possible 4 (probable TIA in the past)

I expect you have thought carefully of your particular stroke risk...?? Wishing you all the best and well done! Xxx

[WendyWu20]

As reported in the original post, my CHAD score is only 1 for being female. I now take natural anticoagulants, and I always carry the Apixaban with me, with the intention of taking a tablet if I do go into AF. And I always know when I'm in AF :o) But I appreciate your concerns, and I don't advocate my methods for anyone else.

[Hidden in reply to WendyWu20]

Good for you! I hate to say this as I fear I might jinx myself but today is my 1 yr mark since my last a fib event. I went off daily flecainide last fall with my docs reluctant approval. He had me do a month of event monitor to prove no a fib( to him, lol) I do now have an Apple Watch which reassures me bit I’m like you, I can feel when it kicks in and when it stops. Here’s to no more a fib🙏🏻🌟💜

[Hidden]

That is all so good to hear Wendy ! Will be very interested to hear how you progress over the next year or so. ( too scared to give up warfarin though but then I'm much older than you !)

Sandra

[Paulbounce]

I learn something new every day. I`ve just researched a Chad score. It seems I`m low but risk I won`t every chance anything. It`s always good to learn about these things.

Wendy wrote 'I've had quite a few comments from people saying that I'm looking too young and must either have a lover or be doing magic'.

Good on you Wendy - keep it a secret but stay looking young heheh.

Best,

Paul

[CDreamer]

Hi Wendy - well done you! My view is that when the meds don’t help then it is time to find an alternative. Other than Apixaban I take nothing now and have to say felt much, much better after stopping. I did stop Apixaban for a while but restarted as soon as AF returned but I haven’t had any affects from it and in fact my hair seems to have thickened considerably. Funny how we all react differently.

All the best CD

[healme]

Interesting to read your comments. I have been experiencing some weird but not so wonderful side effects from my medication recently including severe dermatitis. My cardiologist has changed me from Bisoprolol to Soltorol then Flecanide and Lisinopril in the past six months so it could be any one of these that are causing it. He is Greek and we find it difficult to understand each other. But since an Ischemic stroke in 2017, a diagnosis of AF and a leaking mitral valve I have been on Apixaban and I'm convinced that they are responsible for my sore bleeding skin condition. However it isn't possible for me to stop taking Apixaban with my history as much as I would like too. What alternative Anticoagulants are you taking and are they safe ?

[Hidden in reply to healme]

Hi I had problems with Apixaban and I changed to Edoxaban which seems to suit me better but I don't like taking any of the drugs. But like you I have leaking Aortic valve and high blood pressure and LVH and a dilated aorta all things that increase my Chad so I'd be mad to stop. Try changing to Edoxaban see if it helps.

[healme in reply to Hidden]

Thanks scoobisu. Just written a long reply to you that vanished for some reason. So briefly in case it happens again. I've been on Apixaban for 20 months so my GP will probably say it isn't them but I will ask him to try Edoxaban and see how it goes. It seems we have had similar problems and meds. Just two years ago my life was normal 😉 well that's what I thought😀

[Hidden in reply to healme]

Thanks for the reply. I was ok to start with on it and then it started to have an effect it was my stomach that was the problem and as soon as I stopped it things got better. Maybe if you tell the doc it's a process of eliminating the possible causes?

I know up to two years ago I was living a nice normal busy life lol I was working, a busy office manager sporty, working 50 hours a week etc but I had high BP 226/125 gp sent me to A&E after 5 days in cardiac unit and 10 different drugs I've never been back to work and things have just esculated. But I'm positive and there's so much worse out there so onward and upwards I reckon. I have whittled the drugs down a bit though 😊

[SweetAdelyn in reply to healme]

I was on Xarelto and had edema in lower legs with a terrible itchy rash which hard as I tried I couldn't stop scratching and legs also felt like concrete blocks by the end of the day. I would also wake up with blood (sometimes quite a bit) on the pillow, enough to be scary. At the beginning of the year the EP I saw switched me to Edoxaban which he felt was better tolerated and I have to say the swelling and the rash are nearly gone and the bleeding has completely gone. I have had no new bad effects either.

[healme in reply to SweetAdelyn]

I am definitely going to ask my GP to try Edoxaban. You almost described my symptoms perfectly. Thanks for your feedback.

[Chryseliz]

Hi Wendy, I have also started to reduce my medication. Doctor took me off bisoprolol because it wasn't working and put me sotolol instead. I felt a 100% better by not taking the biso. The sotolol worked to a certain degree. It didn't do anything to stop the freqent episodes of af but if I take 80mg sotolol as soon as af begins, it stops within an hour or two.That is a vast improvement as episodes could last 8-12 hours upwards before. I was prescribed 80mg morning and 40mg at night. After 3 months I am now down to 40 mg a day. So I hope to use it as a pip in about a month or two,when I finally get free of sotolol. I didn't know that it was a well known fact that sotolol can cause hair thinning.I

had to do this because my hair has been falling out/not growing at such a rate I have to do something. Like you, I feel so much better with so much medication. Hope my hair grows back eventually,when I'm completely free of sotolol. My best wishes to you Wendy. Christine

[WendyWu20 in reply to Chryseliz]

Yes, it's always a question of which option gives the best advantage overall. I'd probably take a PIP of any kind if it dramatically reduced the length of an AF episode. Mine last at least 12 hours.