Advice on Anticoagulants : Hi everyone... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Advice on Anticoagulants

Birky profile image
4 Replies

Hi everyone, it’s always humbling to see everyone’s journey and the positive and not so positive journey. I’m just curious.

I was diagnosed in 2016 with APS after lots of blood clots, saddle PE on lungs lungs, clots in heart ect.. anticoagulants for life.

Has anyone out there stopped the anticoagulants?I’

I’ve moved from warfarin to rivorxaban 20mg for life. Im just so tired of them at the moment so any advice if I just stop

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Birky
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HollyHeski profile image
HollyHeskiAdministrator

Hi Birky, last time we spoke you were having difficulties stabilising your warfarin and your INR was only set at 3, was this why you were put on rivaroxaban?

With your health history I would be so worried in stopping any anticoagulants.

Why are you 'tired'? Is this physical tiredness or a I'm fed up tired?

From memory you have a good APS specialist, can you get an appointment and talk through?

We are happy to talk through with you here anytime.

marion4711 profile image
marion4711

No, don't give up the anticoagulants. I was taken off warfarin and given Rivaroxiban but then received a letter from my hospital informing me that new evidence showed it was not effective enough for people with APS. According to the latest research the risk is high and you should be on Warfarin as it is the best treatment for preventing a recurrence of blood clots.

MaryF profile image
MaryFAdministrator

HI, please don't stop your medication, you had a hard long journey to get some sort of health back, make sure if you see your GP or consultant, that you get other things tested such as Thyroid, D, B12, Folate and Ferritin to make sure that there is nothing else adding to how you might be feeling at this current time, and do use this forum for support as much as you would like to. It would very dangerous for you to stop anticoagulation. We all get worn out with our drug regimes from time to time, as it can be tedious remembering it all! MaryF

Rylan21 profile image
Rylan21

I was switched to Xarelto 20mg after 7 weeks I had a TIA and was then switched back to warfarin and added Plavix... I would not stop the anticoagulants.

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