Hi,
I seem to remember that there was a post which cited a study about tapering the new NOAC drugs when getting off, as the risk of stroke was heightened after abrupt withdrawal (more so than just by not taking any anticoagulant). Can anyone help me find that? I tried on the Net but didn't succeed, but I am sure I even read this study/page.
Thanks,
nette
I've read similar but being nosey ,wondering why you are coming off them. Is it to go on warfarin? If so there will be a protocol. If it's for surgery you will probably get anticoagulant injections instead (ow) to cover you.
I felt bad from the beginning. Sore throat, swollen throat, lymph nodes swelling. Numb hands and constantly peeing blood and bladder feeeling irritated. Those things were bad from the beginning on March 1st on Lixiana and that really was bad as it also made my liver enzymes go up. I have a problem since chemotherapy so liver will react fast to meds. So no more Lixiana, change to Xarelto. Liver enzymes normal, but throat so bad I can barely swallow and a kidney colic they don't know from what and blood in urin worse. Not to mention several other minor probs like my joints acting up. So now Xarelto reduce to 5, I felt better, but I try once more now with Eliquis. Will see how it goes.
Hi Nettecologne
I don't know the answer, but I doubt that it's necessary and that's only down to my probably wrong logic, which is that all the NOACs have very short half lives, the longest one being rivaroxaban as it is taken once daily. And even that has a half live of 5-9 hours in the healthy and up to 11-13 in the elderly.
So that means take your dose at say 9am, by 9am the following morning only around 6.25% of the drug is still in your body (6 hours half life) and 25% if a 12 hour half life.
Plus to my knowledge most of the drugs do not come in much lesser strengths, so tapering off would presumably have to be lengthening the time between taking them which again given their short half life does not seem sensible.
There might, of course, be other reasons to do with the Factor Xa interactions that I am not aware of, and more than happy to be educated about if anyone knows.
Be well
Ian
I found somewhere that NOACs change your blood up to 30 days after stopping, so the rebound stroke problem would not depend on the half life of the drug.
I haven't seen that and I understand that the half life is the key. Originally I was on apixaban which is taken twice a day and I think that I was told that two consecutive missed doses meant almost no protection.
Warfarin is the longest half life of all the anticoagulants. I know that in my case 5 days after stopping it INR had dropped from 2.5 to normal. I was being bridged by clexane for an angiogram.
Therefore the rebound stroke problem does kick in.
Sorry if I do not explain myself clearly. Maybe a language problem as I'm German, so please excuse anything unclear. What I mean by rebound stroke is not just being unprotected as before taking NOAC or anything like that. This is a risk which is known and can be calculated (i seem to remember that it is about 1,5 per patient year?)
But the NOACs cause a new and much greater risk of stroke than one ever had before when you get off them. At least that is what several studies tell us. It is a rebound effect on getting off which ist not restricted to the risk which one runs when having AFIB and not taking anything.
So we have
risk 1: having AFIB and not being on anticoagulation of any sort
risk 2: having come off a NOAC completely and recently (last 30 days)
I am talking only about number 2 and that is what up to now we and also some docs are rather left in the dark about. Cardiologists are told by the way, they should and could know.
I asked my cardio about the rebound effect and hhe just dismissed the idea. He was a bit too hasty and cavalier about it. I'd like to know the facts about this but i'm not sure any exist. The studies i've read are inconsistent.
Well as the half life of NOACs is 24 hours or less - why would you need to taper? Don't understand he logic but interested in whoever posted the study link reposting and reading.
I stopped immediately and no-one advised me otherwise. As that was 2 years ago now and I am still here I am assuming there were no adverse effects.
I just know that there is an increase in stroke more than would be expected but have not yet found or understood what problems in blood are responsible for this. My "blood specialist" told me that going off coumarin different blood particles react differently as far as timing is concerned and that is a problem getting off that.
Sorry I did not understand exactly, so cannot explain better. But she did not know this goes for NOAC too.
My suggestion is that the person I would seek advice on this issue would be a Naturopathic, Consultant Pharmacist - I know they exist in very tiny numbers but how and where you might find one I don't know.
I just had a quick look, they exist but only in private practice, as far as I can tell. There is/was an NHS naturopathic clinic in London which was the only one in the country - perhaps search there?
I think two completely different issues may be being confused but I may be wrong. I am also not 100% sure of all the details and can't find the study to refresh my memory.
I believe there was a study about stopping Anticoagulation but that was in order to have operations or procedures. The conclusion was that there was increased risks and higher incidents of clotting but the reasons as to why stoping and restarting caused higher incidents was unclear but also I don't recall whether the study looked at NOACs or warfarin or both.
NICE have in the last couple of years said that warfarin should not be stopped for dental work and INR should be below 4.0 (I don't know what it says the NOACs as I am warfarin).
For many procedures the feeling by leading medics in cardiology is not to stop any medications including warfarin but again not sure about NOACs. When I had my catheter able almost 18 months ago there was no break in warfarin and I had it the night before and on the evening after the ablation as normal.
Where essential to stop Anticoagulation then bridging is employed. This happened to me for my angiogram last month where warfarin was stopped five days before and then had clecane (?) as bridging.
The second issue is around stopping medicines on a permanent basis and this applies generally to a plethora of medicines. Years back nearly always they were stopped cold turkey. However with quite a few if was discovered / observed that this causes problems and now many medics suggest phasing. This applies to things like Bisoprolol, statins, antidepressants, and quite a few others.
Hope this helps. I hope others comment as well.
There was this trial which showed a 20-fold increase in strokes after stopping NOACs:
journals.plos.org/plosone/a...
I don't know if this is the one referred to.
No, but that one is even better.
That was for Rivaroxaban and Dabigatran. I'm still trying to find out if it's true for Apixaban as well. Lots of rumour and speculation, no solid science....
>>NICE have in the last couple of years said that warfarin should not be stopped for dental >>work and INR should be below 4.0 (I don't know what it says the NOACs as I am warfarin).
I spoke to my dentist about his out of curiosity after I had asked him about adrenaline-free injections. He said tooth extractions on people with warfarin was not a problem but he always rang patients' GPs for advice if they were on a NOACC. He said half the time 'they shrug their shoulders' and that he finds clinics in hospitals much better at advising.
That said, he had done extractions on people on a NOACC and whereas in the most cases it was okay, he had encountered a couple of bleeders who he'd 'run down' to A&E immediately.
I must explain that I do not do well on NOACs so want to stop. And I know that I read somewhere that there is somethign called "rebound stroke" after quitting. The study Mark put here seems to say that too and I habe found several more studies to the same effect. A specialist I went to never heard of this before so I wanted to show her something written. Thank you all.
It does seem that getting off NOACs there is a risk much larger than just could be explained by someone with A-Fib not taking a blood thinner of any kind. And larger than getting off coumarin. I wonder when they will put this into the open?
So I am right now trying another NOAC (Eliquis). If this interferes with my quality of life as the others did I will quit I think, but do so slowly. Xarelto offers this possibility, as it goes from 20 down to 2,5, so tapering is possible.
Were you on warfarin?
If no are you willing to try warfarin?
If the answer is yes then you can switch from NOAC (well at least Apixaban) to warfarin fully protected. I was on apixaban and needed to change to warfarin for an ablation. This was done by local Anticoagulation service specialist nurse. On a Monday morning went in for initial INR test which was 1.1. Told to start warfarin AND to continue taking Apixaban. Went back on the Friday morning and I think INR was about 2.2 and was told to stop apixaban as INR was greater than 2.0 so warfarin was fully protecting. At the time I was told that some GPs incorrectly stop apixaban for some days and then start warfarin so in effect there could be 7 or so days without proper protection.
Hope that helps but note that almost none of us on here are medically qualified.
I am thinking about warfarin, if this does not work. Problem is that the testing for warfarin at my docs is done with venous blood and my veins are shot after chemo and so hands only possible. And we do not want to spoil the last possibilities, neither my docs nor myself. But I might go and look if there are docs who do testing like one does at home, that is like sugar testing, isn't it?
Yes. Some practices do. However in your circumstances you may be entitled to have the strips on prescription if you buy the tester (you can get it vat free on the Roche website) or you may possibly be able to have that prescribed for you. Not sure if Germany is the same as uk in these aspects.
I have only skimmed MarkS article but got the impression that it happened with warfarin too? Happy to be corrected.
I am sorrry to say you are right. But with warfarin they know that it happens (rebound stroke during the first weeks) and know why (something in the blood does not change back to normal all equal). With the new NOACs they are just starting and not telling people. Article of MarkS says risk is 6,9 times higher than would be expected in people with those risk factors without protection during the first 30 days without. And they think it might have to do with "a rebound hypercoagulability" after quitting. Than is why I think tapering is good maybe.
This thread is 2 years old, but still of concern to others like myself who are looking to come off our NOAC medication.
My experience on/off NOACs
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When I initially started taking XARELTO (rivaroxaban) I was advised that I could swap between different NOACs or VKA (i.e. Warfarin) if needed. In my particular case the doctors that initially treated me also advised me to come off the rivaroxaban after 3 / 6 months as I was still considered a reasonably fit "young" (ish) male, and I did, however as it happens I was quite lucky in that I also happened to get some blood test done some time shortly after stopping the rivaroxaban. These revealed that even though all the known clot factor indicators came back negative, it still showed increased trombotic activity and subsequent this together with my family history considered resulted in me being told to remain on the NOACs indefinitely i.e. for TROML.
However I haven't been feeling all theat well since starting the rivaroxaban (e,g, headaches which I never used to get, occasional internal bleeding which I am at higher risk of, severe fatigue etc), which is why I would ideally like to stop taking the rivaroxaban, but I've been hesitant ever since. However, during a non invasive surgical proceedure I discovered something that started to worry me. The consultant (Prof) who was going to perform the proceedure advised me to remain on the rivaroxaban even though there was a small chance of bleeding. He stressed that the risk associated with stopping rivaroxaban far outweigh the chances of bleeding during the proceedure since the risk of thrombic activity and developing a DVT is far higher. I believe this is also what's generally described as the "rebound effect" associated with stopping NOACs.
Now even though this has prevented me from stopping rivaroxaban due to the associated risk (confirmed by the research link below posted by MarkS) it also explains the elevated thrombotic activity that was picked up by my blood test after I temporarily stopped the medication as per initial doctors advice. This gave rise to various question for me. Didn't the doctors that initially treated me actually know about the risks associated with stopping NOACs and if so why was this not explained to me at the point when they told me that I could come of the medication after 3 / 6 months. The other thing that puzzles me is why the doctor in the vascular clinic simply recommended I go back to taking the NOAC for TROML after detecting increased thrombotic activity as part of the blood analyses associated with stopping rivaroxaban . I mean clearly this was to be expected and not reason enough to suggest I stay on the NOAC indefinitely. Fair enough my family history may have played a part, but then again all the known clotting risk factors came back negative, so perhaps the advice to remain on the NOAC for TROML is not that compelling after all.
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In any case hope you are all doing all right (especially @nettecologne) and if anyone has any more feedback on stopping or tapering NOACs I would appreciate a follow up post.
I always doubt 'family history'... In 2008 my Doc wanted me on blood pressure meds for life considering my family history... I queried that and he said my granddad died at age 33.... I said "Yes, but that's coz the Germans shot him"....He said ok never mind... BP now is 128/78 63 pulse..
I did try Marcumar as last resort and it was better than the NOAC as far as side effects were concerned but still bad enough for me to quit end of 2016.
So on nothing since then. And AF is getting much worse, so thinking about having the LAAC to close heart ear.
NOACs affected by urinary infections?
American TV ads for NOACs.
Discussing NOAC/Warfarin question.
