Sticky Blood-Hughes Syndrome Support
8,086 members8,325 posts


I have been on Warfarin for the last 10 years and was told I will be on it for life. My INR, however, seems to be a continual moving target. I have now been taken off Warfarin and put on Rivaroxaban to control my INR. I have also been told that I no longer need to have my level checked. If that is the case, I am wondering why it has taken so long to be put on this medication !!

Has anyone else had experience of Rivaroxaban and if so how did or do you get on with it and do you have your INR checked at all ??

11 Replies

I was on warfarin for 6 months and my in was all over the place for not reason .. much better on rivaoxaban no checks just take the tablets I've been on 9 months and so far no problems


Hi Kentish Man

Sorry to hear you have had such a bumpy ride with warfarin.

Rivaroxaban does not need the regular blood checks that warfarin does as it works on a different part of the body's clotting mechanism. You do not say why you were taking warfarin, however The National Institute for Health and Clinical Excellence has approved Rivaroxaban for use in different conditions. This has happened over the last few years at different times. There is also a recommendation now that if a person is not well controlled on warfarin then one of the newer oral anticoagulants such as Rivaroxaban should be considered. You should still have a blood test once a year to check your kidney function.

Have you been given a fact sheet on it, if not you can get one from AntiCoagulation Europe. Go to and then go to publications where you can read or download the information.

1 like

Hi Warfarin 1,

I was taking Warfarin as I have Hughes Syndrome and have also had quite a few Pulmonary Embolisms. It is also viewed that it helps with my Polyarteritis Nodosa.

Thanks for the link and I will now take a look.


Hi I took warfarin for pulmonary embolism x 2 and then when I'd been on it the recommended 6 months they took me off and 5 days later I got p/ e again ...and 5 months that later I was diagnosed with aps. But now I'm on rivaoxaban hopefully everything will be ok .



Just a quick answer to your question.

Rivaoxaban, like injecting Heparin (such as Fragmin & Clexane), as I do, operates on a different part of the 'clotting cascade' and does not affect INR. So, your INR should now return to around 1.0 and that is ok. On Warfarin my target INR was 4.0 but on Fragmin my INR is 1.0 and I feel much better that I did on Warfarin.


1 like

Hi Dave,

Thanks very much for that. I knew that Rivaroxaban was different to Warfarin and worked a different way. I also know that it is not reversible, whereas Warfarin and some others are.

I have only just started taking it, so it is too early to say if I feel better yet. I have also had some of my other meds reduced. So I am hoping that, one way or another, I start to feel a bit better.

Thanks again,



Let us know how you get on.


I am now on Eliquis and it is more expensive and although you do not get monitored the danger is that you can not get a shot of vitamin K to stop bleeding and if you do bleed it is a bit more dangerous...but check in w/your pharmacist for doc feels it is more effective than warfarin and highly recommended that I switch far (10 days in) I can't tell any difference in my symptoms (headaches primarily)...


I was put on Xarelto for a very brief duration, was happy that it did not require regular INR checks,,but the happiness was shortlived as I had to be hospitalised for several days for intense menstrual just dint suit me back on warf again..for the last 2 years. With a consistent diet (same type of food everyday), INR has been in the reuired range of 2+.. the bleding is still heavy but that's du to APS+Warf I presume... and so it goes :)


I have been taken off Rivaroxaban as they feel it does not fully cover me for Hughes Syndrome. So back on the Warfarin and the fortnightly checks. It was good while it lasted !!



I wonder two things (at least); do you have en APS-Specialist who is managing your different drugs (which you tell us a doctor took you off, incl Rivaroxaban? I do not know if you have other autoimmun illnesses you are treated for.

Did that APS-Specialist give you an explination why again Warfarin, which you were never stabil on, as i understand?

As Dave is saying Fragmin is another drug besides Warfarin and you do not have to test your INR. Read what Dave wrote 2 months ago!

If you are going to take Warfarin I wonder if you are Lupus Anticoagulant (one of the antibodies they test for APS)? Try to selftest as that way it is easier to keep a steady INR and do a test at home at least once or twice a week.

I am on Warfarin and have Lupus Anticoagulant (which can make it difficult to remain on a steady level of INR). I selftest since almost 3 years here in Stockholm with a therapeutic level of INR 3.2 - 3.8.

Best wishes from Kerstin


You may also like...