Coming OFF XARELTO and already off WARFARIN what next any other NOAC with no or less side effects

Hope to have good results from recent blood test and ECG next week..for my Paroxysmol A/F as both the above have caused me many bad side effects...anybody had the same experience and what have you been prescribed or used supplement used to keep the bloods OK..there is talk about aspirin, will this be enough or does any one use anything natural to help I have had problems with . All Joints, Muscle pain, low energy, affecting walking, numb feet. foggy fuzzy head. light headed....does anyone have or use pill in pocket with aspirin...has anyone else come off the above and what were you prescribed. would like to hear from you. Thank you

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  • I see from your profile that you are in the UK. Over two years ago NICE withdrew the use of aspirin as an anticoagulant and use with AF. It does have its uses for things such as an antiplatlet.

    As for the use of an anticoagulant as a pip most believe that it is ineffective because you may be having paroxysmal incidents that you are unaware of during the day because they are asymptotic or you are having them at night. If during the day then it could take some days for the Anticoagulation to be fully effective and up to that point you wouldn't be fully protected. Obviously you must ask your medical team. There have been other posts where anticoagulants as a pip were discussed. I am not medically qualified.

  • Aspirin is no longer recommended in the uk for af. If your risk score indicates anticoagulant as being beneficial then noacs or warfarin are your choices and there are now lots of noacs to try. Apart from bleeding, warfarin is usually very well tolerated, so you need to be certain your symptoms are definitely related to the drug ie start with taking the drug, disappear when stopping it and recur again on restarting. These are important drugs to take to reduce your risk of stroke, so I would suggest you work your way through the noacs or try warfarin again as nothing else will give you equivalent stroke protection.

    I use pill in the pocket flecainide which I find effective for my paroxysmal af, but I don't use aspirin as there is no evidence it is effective in af.

  • i too had problems with both Xarelto( bleeding) and Warfarin ( nausea, headaches, generally feeling unwell.)

    G.P. suggested trying Apixaban and I have had 12 months without side effects ...only slight drawback is that you have to remember to take it twice a day .....but that is a minimal problem set against the benefits.

    My local pharmacist believes it is less stressful on the system so why not have a talk with your doctor and give it a trial run.

    Good luck.

  • I set my phone to remind me so far no problems

  • Are you taking any medication for your AFib besides ant coagulant . Your symptoms sound more like side effects of medications like Flecanaide. I take Pradaxa with no problem. Gracey

  • I take half an asprin 2,x a day...recommendation by my cardiologist

  • Hi 2436ca

    As you have probably read on this site aspirin is no longer recommended if is is being prescribed solely as an anti coagulant for AF.

    Now obviously I know nothing about you or your diagnosis, but please Google CHADS2Vasc scare and check your own score online, and if it is 1 or greater then please also go to the AFA website and read about anti coagulants.

    heartrhythmalliance.org/afa...

    Now it may be that you do not need anti-coagulants, and that your doctor has given you aspirin for another reason, but please do check

    Be well

    Ian

  • I just started taking Apixaban about 2 weeks ago and had absolutely no side effects, Pradaxa gave me GI problems but no bleeds.

    There is no known 'natural' herb or supplement that is known to provide the consistency of an anticoagulant but there are many things which can interact and increase the potency of some anticoagulants such as curcummin, the extract from turmeric which is used as an anti-inflammatory.

    Our GP practice is taking part in a long term study of Omega Oils which is looking at whether daily supplement or not they can help reduce strokes - but not applicable for those with AF.

    My view is that all medications and supplements, herbal preparations etc do have side effects but unfortunately there is no way you can know in advance what is going to work for you - or not - really wish there was!

    It is a bit hit or miss.

  • I started on rivoroxiban and had all the side effects you mentioned and more, it took a long while to realise it was the NOAC as I was on amiodorone and all sorts at the time.

    I was then put on apixaban and after only 2 doses I was in A+E throwing up blood.

    I'm now on pradaxa and so far seem to be tolerating it ok. Fingers crossed.

    So as you can see, we are all different.

    All the best

  • All Joints, Muscle pain, low energy, affecting walking, numb feet. foggy fuzzy head. light headed.

    Are those your side effects on both warfarin and Xarelto?

    I am in pretty much the same situation, tried Eliquis, Xarelto and Apixaban, now on Warfarin. Always symptomatic, just symptoms vary (liver trouble, kidney and bladder trouble, skin allergic, now on Warfarin light-headed and trouble concentrating). No other meds. So I am thinking about what will follow if I have to quit Warfarin.

  • As I've said in other conversations I had joint pains on my weigh bearing joints when taking Warfarin and twice stopped it and the pains went away when back on aspirin. Research indicated that 1mg warfarin with Amaranth and E123 might have been the trigger.

    In February I went back to Warfarin and did not use any 1mg tablets. Since then I have not had the joint pain. Peter W told us recently that the 1mg tablets he has had this year no longer have Amaranth or E123 in them. My GP was surprised when I told him that I was 'right again' and that the offending additives had been removed.

  • Looked it up and my Warfarin (=Marcumar) has no E123=Amaranth. So cannot be that in my case at least. But interesting.

  • Check your tablet box. Some makes had it and some didn't. I suspect all now are manufactured without but it is possible (though probably unlikely) that some old stock is still in the system.

  • I have ME together with my PAF And has all the symptoms you describe even before I was diagnosed with PAF. I had a very bad reaction to bisoloprol and am now on flexanAide and apixaban. I was diagnosed with adrenal fatigue and since I have been attempting to deal with that I am a lot better although still on the same medicine.

  • Are you sure it isn't something else causing the problem eg Bisopropol? If you take a statin that could be the culprit as it reduces the amount of CoQ10 in the body, which can lead to muscle aches etc. You can take CoQ10 in capsule form - or discuss stopping the statin with your doctor.

    Also there have been several posts about the importance of taking NOACs with food (a meal rather than 'just some fruit') This does seem to help some people.

    If you really feel you must come off all anticoagulants there are alternatives you can try, probably best taken together; as they may not all work effectively or the same way. BUT there is no guarantee that they will protect you. Consider turmeric, fish oil, vitamin E and others (ginger?), but how can you tell if they are effective? You can't, you can only know that they are probably better than nothing.

    Warfarin or an NOAC is the only known way to be safe. A stroke will affect you for life.

  • Interestingly this question came up today at conference and we were told that experience has shown that there is little point on trying other NOACS if one is not tolerated as they seem to have similar effects. Apparently about 1% of people are not able to take any anticoagulants and for those an LAAO device may be appropriate. Only problem is that NHS have spent their research budget on these already so no chance unless you cough up yourself.

  • Bob. That's maybe what they said but there have been quite a few people on here who have had problems with one of the NOACs but have been fine on another one.

    One problem there is the lack of coordinated feedback.

  • Thanks Bob for your reply, the Dr said the same..and has prescribed a lower dose of the Xarelto, & say to see them in three weeks to see if it helps. Ecg was not good on the day so not able to come off the drugs as h/rate all over the place...been prescribed a lower dose of 1.25mg Bisophorol once a day and again and checking back in three weeks....as he wanted me to go back and restart Warfarin..which I did not want at this stage...will see how it goes, as I had hoped the ECG would have been ok, and aspirin would have been the thing...mentioned he has 8 patients out of 2000 plus patients that are chemical sensitive to some drugs? Thanks..will keep you posted

  • Sorry, what conference?

  • Heart Rhythm Conference Patients day in Birmingham England where we are based.

  • Thanks for your reply, reporting back to Drs on Monday, re recent blood test and ECG...there appears to be no chance of coming off NOAC, and Dr said all other will have a similar affect?? and as my joints, pain and numbness in feet is getting worse daily...and after one electric shock treatment that only lasted a day and ended back in AE and hospilized for 5 days.... What is LAAO, and if not on the NHS ...any idea of cost...as I feel as I can ask my DR on Monday...Thanks again for the information.

  • Left atrial appendage occlusion device. Look up details on AF A website. It is thought that most clots form in the left atrial appendage, a small sack attached thereto so by fitting something like a Watchman device which is a tiny teat strainer the risk of stroke can be reduced. I think,the jury is still out on that.

  • Thanks will look into....

  • Matt commented that the only exception was was gastric problems with dabagatran.

  • AF SAW WAR

    I have very bad side effects from NOACS and can only tolerate Warfarin.I also take Flecainide daily. Hope this is of some help.

  • Many thanks,Dr reduced Xaralto dose and the Bisophorol have to go back in three weeks to see if it helps, or it will be back to Warfarin..Thanks for response. Always helpful to hear from others. Thank you

  • Only just found this thread. I too can't take any of the NOACs- had a violent reaction to dabigatran last night which was the third in 6 weeks- waiting for warfarin now. Can I ask please - if you've only had Af diagnosed on one occasion and never seen since do you still have to stay on blood thinners? Have to say I had a stroke also.

  • Unless you have an implanted loop recorder you can never be sure that you have only had one occasion going into AF. Quite a few people on this forum have had holster monitors on from 24 hours up to two weeks and have been surprised as to how many incidences they have had that they were unaware of. Personally I wouldn't stop Anticoagulation and I haven't had a stroke. As you have had one then I suspect that you should definitely be on Anticoagulation unless bleed risk is much higher. Discuss with your EP or cardiologist.

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