Hi fellow sufferers all, I'm due to have a CT Scan (is this easy to go through???) with a view to being put on Flecanaide, if my arteries aren't clogged with plaque.
Is anyone else on Flecanaide (spelling?) ? How do you find it? Does it solve the Afib?
I'm told I also have to continue to take a low dose of the very tiring Bisoprolol so am not sure how much this addition will improve my energy levels...? (have CFS of 47 years standing too)
I'm on Bisoprolol at the moment 5-7.5mg daily but things like occasional gardening, occasional part-car washing, walking further than usual (4.000 step limit approx) will set it off for 10 hours. So my EP suggests this is the next thing to try.
Also have to go on Apixaban as he isn't versed in herbal medicine. (I've been taking Gingko Biloba and Natto etc for clot dispersal.) Rivaroxaban made me weak and shaky and defocussed one eye etc so wasn't compatible with any quality of life.
Will Apixaban be better?
Any comments welcomed!
Thanks in advance!
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Ribbony
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Hi, yes I've been on Flecainide since my first and only attack of Afib which was 12yrs ago. Apart from occasional ectopics I haven't noticed any side effects and haven't had another attack of Afib so keeping fingers crossed and carrying on with the flecainide. Good luck with your scan. 😀
Flecainide worked for a while with me, first as a PIP and then as a daily dose for about 2 years until AF broke through. It’s not a drug I wanted to be on and wouldn’t want to take it long term as it is a drug with affects, although you may not notice them for some years. Bisoprolol caused me huge problems, as it does for many people on this forum but you are advised to take it if on Flec. Bisoprolol is not a drug I would take with CFS, or a number of other conditions which it can exacerbate, I also have along with neurological autoimmune disease. I stopped all drugs for AF, other than anticoagulants, some years ago. Pacemaker proved to be the solution for me. It is worth getting your CFS doctor to consult with your AF doctor as it is really hard to manage several conditions.
There are treatments for AF which help some people and not others so it’s all very individual and some tolerate the drugs much better than others so sometimes it’s a matter of trial and error.
Is your CT going to be with contrast? If so ensure you run it by your CFS doctors beforehand. I, like Bob, would have thought that Angiogram would be more appropriate?
Anticoagulants are the one essential, prophylactic drug so finding one that suits you is important. Treatment after that is mainly about quality of life if you have no underlying conditions. I’ve been on Apixaban for several years now with no noticeable affects and feel much safer knowing I have some protection against stroke. The problem with herbal preparations is that there is not enough evidence to show that herbs can offer controlled protection without exacerbating bleeds.
Ask probing questions of your doctors and do your research to know the questions to ask.
Rivaroxaban seems to have caused problems for some people - did you know that you needed to take it at the same time of day with a full meal which was high in fat and protein? I know several people who had problems with Rivaroxaban either because they took it with only a biscuit or a piece of toast or on an empty stomach. Apixaban is x2bd and no need to worry about taking with food.
Thank you for your input. I am amazed to hear you mention a CFS Dr!! I have never met one in 47 years of suffering from this condition following Glandular fever and severe ME, (diagnosed as Royal Free disease by one retired Dr at the time) no Dr has ever understood it or been able to offer anything to improve the fatigue. So I've been self managing my condition, gaining help from B Vits especially large doses of B5 and various Magnesiums and diet. there is a Dr in Wales, Dr Sarah Myhill, who has invented Mitochondrial and other tests, but she isn't taking any new patients. However she's written a book, as has Dr James Wilson and others whose advice I've followed.
No, I wasn't told to take Rivaroxaban with a meal.... Took it with juice before porage.
Reassuring that Apixaban causes no problems for you.
I have yet to have pre assessment for the CT Scan, so I can ask some questions then.
I also wanted to see Dr Myhill as she was the only Dr at that time (2013/14) who seemed to be talking sense.
I learned a lot from the STARS Patient Day as CFS often is a part of a cluster of conditions which align with Autoimmune, Autonomic Dysfunction & EDS - which is why Flecainide or Bisoprolol wasn’t a good fit.
My conditions are overseen by a Neurologist who liaises with my Electrophysiologist as my primary concern is Myasthenia which is autoimmune condition causing muscle weakness - similar to MS but a different mechanism.
It’s a CT angiogram. You are given some meds to take before going to make sure that your heart rate is below 60. I have had two and it’s just like any other CT scan. Non invasive and no complication risk like the angiogram. I had an angiogram and it caused a false aneurysm in the radial artery, resulting in needing surgery and I now have no right radial pulse. The CT angiogram shows arteries clearly so long as your heart rate is below 60.
The machine appeared to be the same, but is only used for CT angiograms in the cardiothoracic center. It may well be a different spec. I don’t know. The contrast had the same effects as a normal CT scanner. My cardiologist uses this all of the time. If results dictate he will then do an angiogram
Sorry to hear about your cancer referral. I have had two separate primary cancers so very familiar with all of the scans, CT, MRI and PET. There are certain parts of the body that do not show on a CT scan. Bladder and stomach for example. Hope all goes well for you. Let us know how you get on.
No sorry I don’t. I understand that the bladder isn’t clear on a CT scan. My cancers were kidney and breast, but I do know people who have had bladder cancer and cystoscopy is the diagnostic tool for this one. I know it is a worrying time, but it may well be something innocent. Try and stay positive.
Hi there I’m on apixaban and it’s fine, twice a day. I see it as our little helper to cut out the stroke risk.....bisoprolol I take 1.25. Had issues to begin with and I’m sure my energy
levels suffer cos of it, but a resigned to it as do said it aids the blood pressure.
Flecainade I’ve been on ages and don’t see a problem and it’s supposed to keep the afib at bay.
I don’t like taking any of them but apart from energy lacking they all tick along not causing much hassle.
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