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Coming off Apixaban

Ladyshnappz profile image
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I have been on Apixaban 5mg twice a day for 6 months now due to me having a pulmonary embolism due to being bed bound with covid. I’m due to come off my medication today as my doctor insist I not longer need treatment.

I’m very nervous to stop taking the tablets and what effects it will have on my body having stopped the Apixaban cold turkey!

Has anyone experienced any issues after stopping Apixaban?

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Ladyshnappz profile image
Ladyshnappz
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KellyInTexas profile image
KellyInTexasAdministrator

Hello there.

Have you been fish with APS( Antiphospholipid syndrome? )

Ladyshnappz profile image
Ladyshnappz in reply to KellyInTexas

No I haven’t. I apologise I may have joined up to the wrong forum

KellyInTexas profile image
KellyInTexasAdministrator in reply to Ladyshnappz

No problem at all- easy to do.

We wish you a speedy and smooth transition in your recovery.

2022 will be better!

MaryF profile image
MaryFAdministrator

Hiya if not with Hughes Syndrome/APS then the wrong forum, but there are others on here more suitable, let me know if you struggle to find them. MaryF

Philip76 profile image
Philip76

Each case is different and each person must do their due diligence before deciding to take control of their own body. If you are not that sort of person, you may choose to put complete trust in your doctor. I'm afraid I have

learned not to, as the GPs and also some cardiologists have been too hidebound in their approach. I'm 76 years old, an ex-triathlete who had a cryo ablation in 2017 for AFib. I have weaned myself very cautiously off all

medication now. Used a pill cutter and did it gradually.

The most difficult taper was with Bisoprolol, a Beta Blocker. I kept the Apixaban going for a while, 5mg twice daily. But I had the feeling it was dragging me down in some way. So I started taking it once per day to see

what the effect would be. Two things happened. One, I had a little more energy and was able to do more in a day, and two, my morning blood pressure readings went up about 5 points, sometimes more. This lasted for about 5 days and then the morning blood pressures began to drop a little again. The same thing happened when I stopped taking the single remaining daily dose. BP rose 5 points and after 5 days came down by 3. Now ten days later it is back to normal. I find it scandalous that these drugs which are so heavily used and readily prescribed are approved without the manufacturers having to release ANY information about 'rebound' or the effects of stopping.

Your body adapts to any medication, and when you cease taking it your body takes a while to change back, and we don't even know if it will ever be able to change back fully. I contacted the manufacturers of Apixaban but they said they couldn't give me any medical information for legal reasons - talk to your doctor. I did so, and the locum at the time was quite young and keen to help. She contacted them too, but wasn't able to get any further

information. Their leaflet just says something like "you may be more likely to clot if you stop". Well, yes, since it's an anti-coagulant, OF COURSE you'll be able to clot more easily without it. What we want to know is whether we will be rebounding such that we will be EVEN more likely to clot than before we started on the Apixaban. And if so, to what extent? For how long will that rebound last? Deafening silence from drug companies and their tamed GPs. Bisoprolol is even worse - lots of dire warnings not to stop suddenly, but zero hard information.

This is not over in my case. All the medical advice I have received is to stay on Apixaban for the rest of my life, but I will wait another week or two and then gradually re-introduce it, watching like a hawk for any obvious changes to my energy levels and fatigue, especially in the afternoons. I am already experiencing relief from the constant itching by the way. This is a lonely and difficult task, and we must all be aware of the Nocebo effect - look it up if you haven't heard of it. Basically it means you may be more prone to start suffering from symptoms listed as side effects simply because you have been told about them and your subconscious is worrying about them. The direct opposite of the placebo effect, where you get better on a sugar pill because you've been told it's a miracle drug that will cure you. But a BBC Radio 4 program on the subject a few years ago reported that the nocebo effect is actually more powerful than the placebo effect.

Good luck to all medication users - stay aware and don't be satisfied with a doctor who puts you on some medication and then forgets about you for the rest of time, job done. You can read, you have the internet. There are lots of studies being reported on all sorts of common health issues, and some enlightened doctors are beginning to think in "n of 1" terms now. You can look that one up too, but it means focussing more on individual reactions and needs rather than on the average reactions of large cohorts of patients. It is the latter which drug companies fund and which gives rise to the usual mantra from GPs that "we have good evidence that such and such a drug will help you". One size does not fit all, we are all as different as our fingerprints, and some n of 1 based studies have found that a lot of people are on drugs which are wrong for them and in some cases are causing them harm.

But I must end as I started - don't copy others, read all you can and take input from your doctors too. They have, after all, studied for years and do have a lot of information and experience that we lay people don't have. If you had a pulmonary embolism, your situation is different from mine. Have you asked the doctors whether their advice is based on 'best practice' or whether in fact they have been able to verify that the embolism has actually gone? Or maybe they already have done so with a scan of some sort?

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