atrial fibrilation and drug experimentation.

Hi, everyone,

I am new to health Unlocked and I am enjoying reading many posts on many topics written by very friendly caring people. I am 80 years old and Live in British Columbia, Canada. I had my first bout of af about three months ago. Presently I am trying out different prescriptions prescribed by my cardiologist. So far I have tried Rivaroxaban then switched to warfarin when I discovered that there is no antidote for the former. I am fine with calcium channel blocker's and beta blockers which I have been on for many years. However, My doc wants me to to switch from the old beta blocker to the new namely, sotalol. I start today and I am not looking forward to it as it too has some serious side effects. I was also on amarodion for about a month but took myself off when I learned that permanent blindness and destruction of vital organs are possible side effects. That was just too much. I am sure the doc is frustrated. In fact, I know he is. :-)

Ann.

42 Replies

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  • It sounds like your view of these drugs is rather different from most on this site. In particular the issue of no antidote to rivoroxaban is virtually never a problem and similarly with amiodarone; although it may cause serious eye problems, permanent blindness is virtually unheard of and it is the main drug that may put you back into a regular heart rhythm and thus improves heart function and reduce stroke risk.

    It's important to balance risks and benefits appropriately and I think you are taking a very extreme view against these drugs, although of course it is your choice.

    Sotalol has a particular antiarhythmic property that differs from other beta blockers and is a good alternative choice on an effort to get you back into sinus rhythm.

  • Thanks, BIggles, for your input.

  • Amiodarone is not the main drug. it should be used only in certain circumstances, or if nothing else works. The likely side effects are much worse than other drugs, so others should normally be tried first.

  • Right! I learned this in my wanderings through research articles but this is my cardiologist's "best drug". When I refused it he gave me his "second best drug," sotalol which I have also refused. I suppose if I reach deaths door, and who knows, maybe I am already there, I will be desperate enough to take this poisinous brew. 😏

  • After seeing a post about reversal agent for Diabigatran I think that may have been the NOAC our medical consultant mentioned as having reversal agent in use locally- I will check on this. The one for Rivaroxaban and Apixaban was found effective in 2015- not sure of dates when they will be available

  • In the U.K. Sotolol is no longer advised for lone AF by the government advisory NICE.

    There is no problem with the NOACs and lack of antidote as they have such a short half life and will clear out of your system very quickly. In an emergency ie:- major trauma with massive bleeding, there is a procedure that can be done in A&E which would counter any excessive bleeding caused by NOACs. I much prefer them because they have a slightly lower risk of causing brain bleeds than Wafarin, which cannot be countered, whatever anticoagulant you take.

    Also Wafarin be much more difficult to have a beneficial affect as control of INR can be so variable with individuals and diet, I much prefer the NOACs but some people seem to be happier on Wafarin.

  • What is the procedure that can be done in A & E to counter excessive bleeding? All the research I have done has no mention of this . One of the main reasons for people refusing the NOAC's is the lack of antidote.

  • I think there are various options when it comes to management of excessive bleeding and tranexamic acid is one of them.

    Warfarin's antidote sounds good but it is far from fast acting and will do you little good if you sever an artery.

    It should be borne in mind that it's handy to have an antidote for Warfarin because it can be so much dodgier than the NOACs. INR can (and does) wander and you can quite easily get to being miles away from normality, particularly if there's a big gap between tests. As has been mentioned on the forum, if INR gets seriously out of control, it can be fatal.

    Personally I feel far safer taking Rivaroxaban as its protection is steady and I never felt secure with Warfarin.

    I agree with Biggles22 that the risks of drugs have to be balanced with the risks of not taking them.

  • I am now confused ....if tranexamic acid can be used as an antidote why are we continually told that there is no antidote? Also there has been criticism that protection iis not necessarily steady and INR should be checked with the new anticoagulants. Its a minefield!

  • When I switched from rivaroxaban to warfarin I learned that my INR was 1.6 on RivAroxaban which is too low. Now that I am on warfarin my INR is between 2-3 where it belongs. My INR was never checked while on rivaroxaban. Is that common?

  • INR and Rivaroxaban are not related to each other, annhere and no one on any NOAC should have an INR test for the purpose of checking the level of anticoagulation. The test would be to establish your starting INR.

  • Tranexamic acic is (I think) a means of treating very severe blood loss, rothwell and can be used for people not on an anticoagulant. It doesn't counteract the effects of the NOACs and thus is not an antidote. As I understand it, it helps to bulk up the blood and, as is so often pointed out, anticoagulants are not blood thinners.

    I believe tranexamic acid can only be given by a doctor specifically trained in its use and is, I think, very much a life saving treatment.

  • There is often confusion between antidote and reversal agent Rothwell. In general there is no antidote to NOACs but that does not mean they can not be reversed. Also pressure pads . raising of wound etc . all the normal things work just as well.

    INR ONLY applies to warfarin as the other agents work in a completely different way so anybody suggesting INR testing on NOACS just doesn't understand the science.

    As one who was very sceptical about NOACs when they first came out all those years ago I have for a long time been convinced of their efficacy and safety when properly prescribed and monitored. In fact I feel that the N for novel should be dropped now. I guess facatorX antagonists doesn't have quite the same ring about it.

    I should add that as one of the lucky ones for whom warfarin is a non event I have never needed these drugs but am thankful that they exists for those for whom warfarin is not suitable.

  • Don't forget. If you have any other heart problem, then warfarin gives better protection: it protects at more places. Some of this is obvious eg mechanical heart valves, and others less obvious.

  • Thanks, Bob, for this information. I now have a much better understanding between NOACS and warfarin. Neither my GP nor my cardiologist took the time to explain this to me. I am very frustrated with " lazy doctors " who don't take the time to explain things properly to their patients. Although we do not have the vocabulary or the health professional training, they should be able to find a way to explain things such that we lay folks can understand. After all, that is exactly what you have just done. It's not as if we are all stupid, they are just too lazy to bother.

    Ann.

  • In fairness they do have a very busy life and never time to spend over the ten minutes slot. We patients do need to be pro-active in learning about our condition so that we can have a knowledgeable conversation. That way you are a partner in your treatment not just a customer.

  • So true, sigh.

  • Hi, Rothwell. I am new to this group and I do not know what NOAC means can you please explain. thank you.

    Ann.

  • New anticoagulants which have replaced warfarin e.g. Rivaroxoban.. They seem to have many side effects which of course affect some people and not others.

  • Thanks.

  • I tried three of the NOACs and had bad side effects. manage much better on Warfarin.

  • Thanks Nette.

  • The lack of an antidote is the reason I haven't switched to an NOAC. II asked the cardiologist about this just last week, and he said antidotes are on the horizon… Even maybe within the next couple of months.

  • Good news!

  • Thanks, CDReamer. What are the problems with sotalol? Is there a website for NICE?

  • agree with above comments on Sotalol - it is no longer recommended although still a lot of people taking it

    I think there is an antidote now for Rivaraxaban- heard this from our medical lead consultant recently- not sure how it's obtained in general use but he said they have it in our local hospital- antidotes for the other NOACS are in progress.

    One study showed only 3% of serious bleeds on Warfarin were stopped with antidote ( Vit K) and also most bleeds are accessible and can be stopped by compression etc a serious incident would be serious whichever anti-coat one was taking.

    I take Apixaban and have had no problems. Had a fall recently and no after effects!!

  • Thanks Rosie. I have decided not to take sotalol.

  • If you're are worried about a NOAC reversing agent, Pradaxa (Dabigatran) has Praxbind that would be administered in hospital if you had a severe bleed. I take Pradaxa and I work with a volunteer group clearing scrub where I use a bow saw and billhook that could cause a significant bleed.

  • Thanks John.

  • I don't understand from your post what you and your doctor are trying to do. That will affect what you choose to take. You had your first bout three months ago, but how often is it bothering you? Are you experiencing frequent problems of a scary nature which you want to stop, trying to get back from AF to NSR, or just trying to prevent it all happening again?

  • Hi, Polski, Just trying to prevent it all happening again. I feel fine with my old medication plus warfarin and I don't know why my cardiologist wants to switch me over to other meds. My research, such as it is, indicates that I am on rate controlled medications, i.e. amlodipine and acebutolol. Amarodion and sotalol appear to be anti-arrhythmic meds. These latter meds have dreadful side effects which really scare me. And yes, I know that all medications have side effects but I have never seen anything so bad as these anti-arrhythmic's. in another article I learned of a study showing that patients on rate control and antiarrhythmic control have the same outcomes in the end. There is not much difference. I have now gone three months without another event but I am trying to educate myself as much as possible before another event (s). I need to understand all of this before I submit to these dreadful regimens. I am getting more help from this group than from the medical profession.

    Ann

  • Read up on the AF Association's website. There is lots of information there. Your Cardiologist may feel it is his job to make sure these events are minimised. However, providing you are anticoagulated, and your heart doesn't show other signs of trouble which he needs to prevent worsening (and the beta-blocker which slows down the heart rate will be doing that), then all these other drugs are just trying to improve your quality of life. If you have only had one event, then you are probably quite happy with your quality of life, and rightly fear all these potential side-effects making it worse.

    Meanwhile why don't you go down the 'life-style' route ie look into taking magnesium and other supplements (but don't allow yourself to develop regular diarrhea, as that will cause you to lose essential electrolytes (magnesium, potassium etc) and make the AF worse). And consider the benefits of 'healthy eating' - avoid red meat, sugar, caffeine and processed foods. Nothing with aspartame or monosodium glutamate and the like. And look for ways to increase the 'exercise' you get eg move around for five minutes every hour . . .

    Try looking at Dr John Day's website perhaps, and keep reading here, or research past posts using the 'search' function at the top of the page.

    The anti-arrythmic drugs will still be there when you really do want their help to improve your quality of life.

  • Great response, Polski. I am a great believer in the lifestyle route and possibly this has helped to delay AF to this point in my life (I am now 80]. I will check out Dr. John Day's website. Thanks.

    Ann.

  • Found the link for Dr. days website. Here is the link for those who are interested:

    drjohnday.com/get-rid-atria...

  • Sotalol is not new, that is what suprises me. I have been takin g it on and off since 1998 and I think it was not new even then. Sotalol is a betablocker which has two effects, the "getting down your pulse" effect PLUS an antiarrhythmic one. Betablockers usually are only good for a fast heart rate, to get it to slow down. I tried several betablockers, bisoprolol was okay. But I managed my sudden attacks of AF over years on Sotalol, so did not have problems with that one. But I took it as PIP, only when attack was going on.

  • Thanks, Nette, that interests me. What does PIP mean?

    Ann

  • 'Pill in the Pocket' ie to be carried around and taken only when needed.

  • I was on Sotalol for many years and found it an unsatisfactory drug as it gave nausea ( manageable) but the slowing of my heart ( normal rate was 58 bpm) left me feeling exhausted . After seeing a specialist I am now on Diltiazem CD with no side effects.

    Its only a drug for those with rapid heart beat.

  • Thanks, Sleek.

  • Saw the EP cardiologist yesterday to hear the report regarding the monitor I had worn for two weeks, which was three months after ablation. I am very happy to report that there were no events. Yay!! Plan to cut back on 200 mg daily Flecainide though so we'll see what happens then.

    Regarding warfarin… I've been taking it during this first year of a fib and was thinking of possibly switching to one of the newer anticoagulants for various reasons.

    So I asked him… What would you do? His answer: I'd take Eliquis and I would suggest the same for my mother.

    I asked… How is severe bleeding treated for the newer anticoagulants? His answer: in the case of severe bleeding such as in accidents, there wouldn't be much difference between treating someone on warfarin or someone on a newer anticoagulant

    I asked for further explanation and he said: using vitamin K for people on warfarin takes about and hour to have an effect. In both cases, the person would be receiving a blood transfusion.

  • Thanks, Barbara, and very happy for you!

  • What a sensible response from your EP. So in tune with common sense.

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