Sticky Blood-Hughes Syndrome Support
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Is anyone taking Xarelto for APLS/Hughes?

My doctor just switched me from Warfarin to Xarelto because we just couldn't keep my INR stable. Is anyone else taking Xarelto?

18 Replies

Hmmm!! This is one of the new oral anticoagulants Rivaroxaban. So far it has only been licensed for use for AF in the UK and studies are on going for use with APS because of the fact it has not reversal agent.

Is there any reason why you could not have been put on LMWHeparin like Fragmin whilst the trials continued and they found a safe oral anticoagulant?


If I understood my hematologist correctly, it was just approved in the US for APLS. I'm not sure why she chose it over Fragmin or something else. I also have Lupus, so maybe that has something to do with it???


Hasn't been specifically approved nor tested on APS or lupus patients at this time, neither here in USA nor elsewhere. I was just at hematologist last week and she stated that until more studies were done on these types of drugs (direct Xa inhibitors), that she feels its too dangerous for APS patients. Her rationale was that APS patients tend to not act like normal clotters and can be all over the map and very unstable as it is, no need to put more risk there with a drug that hasn't been proven effective.

She also stated she thought that heparins and coumadin were lousy choices but right now all that is known and are considered safe and effective.

Also to note, as an ER nurse (A&E for UK peeps), I had seen several patients come in with serious issues transitioning to this and dabigitran including bleeding, stroke, etc. It is a well documented problem so please be careful. I believe there have been updated instructions on transitioning as well as a warning possibly?


Yes if you go to the FDA website with my link below you can get them.


I think this is what your haematologist was talking about.

This is for DVT after orthopaedic surgery. I cannot find any approval by the FDA for APS.


I also found this on the FDA website which I believe to be the last approval that was given for that drug. I hope that is helpful


I am waiting for Xarelto and my Rheumatologist is in touch with St Thomas's because there is a trial going on or about to begin called RAPS Rivoroxiban in APS. My understanding is that it is not yet ready for APS patients.

My Husband was given Xarelto after Hip Replacement Surgery.

I remain on Clexane injections but because it is expensive they intend to move me onto Xarelto ASAP.

Ask your Doctor to check with St Thomas's.

I wish you well


My GP switched me from Warfarin to Rivaroxaban 12 months ago because he thought my INR was not stable enough. While taking it I became more and more ill. I was lethargic, my brain refused to concentrate on anything, my memory was useless etc etc. By the summer I was barely able to get out of bed.

My APS was discovered following a large blood clot in my thigh. While on Rivaroxaban my blood clotted again. It did not work for me and I will never be allowed to take it again. However, that is not to say that it wont work for someone else - although we all have APS it seems to affect each one of us slightly differently.

Good luck, I hope it works for you.




Thank you for all of the information. I'm in the US, and my hemo said that we're using it off-label because they are still doing the trials with APS. It has been tested and approved for other uses, but the APLS patient pool is smaller and so we are farther down the line for testing and approval. So far, I haven't had any ill effects. It sounds like I'm a bit of a guinea pig in this group for this med. My hemo has other APLS patients on it with good results. I'll keep you all posted on my experience. :)

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hi I have been taking this drug since november 1212 and all is well at the moment, have to have blood test every three months to check on my kidneys but that does not bother me as I have M.S. already so have blood tests taken for my betaferon so no worries for me on that score, just back from holiday, flew and did at least thirty dives, which was fab as if I had to stay on wafrin was never stable enough to be able to control my blood safely and thought no more diving for me, so this drug was a wonderful christmas pressy. big yipeee from me.


I'm on Arixtra which is also not approved for aps so far as I know . . . I believe only one approved for aps is warfarin.


Hi I wanted to reply to this earlier but my password wasnt working. My hemo prescribed it for me as well because im on aspirin and now my platelets, hemoglobin, IgM and IgG are high. My factor VIII is low which complicates things. Im on long island NY where are you from iwantsimple? teresa


I started Xarelto today for aps - switched from Arixtra so hoping not a big change as both are similar types of drugs. Finally free from daily injections which gave me a lot of problems not matter how slow injected, icing and sitting still after.

The change is scary for sure but I had no problems with Arixtra except for injection site issues. Hemo says she has other aps patients on Xarelto for varying reasons and acknowledges it is off label for aps. Will keep you posted.


Good Luck with this and do let us know how you are getting on. There are on going trials in London but as yet they have no results and say it may be a year or two before they do so. At the end of the day it is your body and you must make the final decision about what you put in it. If you are sure this is right for you and your Doctor has all the bases covered then it will be very interesting to see how things go. After all somebody has to try these drugs. Shall wait to hear your news about progress. X


I'm starting this medication in 3 days. Doctor told me I had to stop Warfarin for 3 days prior to starting Xeralto. I also have to take a low dose aspirin with it. I'm nervous about switching.


Its my first day on Xarelto after my third dvt. Im used to taking warfarin, but its doesn't seem to match my lifestyle. As a fine wine merchant and food lover its was hard to ceep away from alcohol and going on a diet. The result of this was INR jumping all over the place. It was horrible to have INR jumping from 2,5 to 4 after just one week. Other weeks my INR was far to low. Im glad for the new meds, but I'm worried about side effects and the fact that theres no antidote. I can eat and do what i want now..but I'm really worried for the new meds and i have developed anxiety after all the illness that i went trough. Now I'm having small panic attacks. If anybody uses xarelto i would be glad to hear your experience and side effects.


I had been on warfarin, high dose 12.5-15 just to reach therapeutic inr, since 1998. I seem to metabolize it horrifyingly quick, and inr would plummet quick - even being late taking a dose would cause it. Adjusting warfarin was always a battle.

After a bleed scary bleed requiring transfusion in Nov 2012, my hemonc moved me to Xaralto. I haven't had any problems at all in that time (currently June 2014). The 'brain fog', cognitive deficits, constant headaches and other neurological issues are practically nonexistent. These issues immediately returned when I went off Xaralto pre-op.

Although I feel a million times better than when on warfarin, I constantly worry whether I'm protected and sufficiently anticoagulated. I wish there was a test to show it is working, and to determine exactly how long it lasts in MY body (as I said, I know I metabolize warfarin abnormally fast, which seems very common for us with APS). Outside of this personal fear, and lack of scientific data as proof I can relax, I'm ever so glad I'm on Xaralto. Its been great so far. I know it hasn't been approved for APS yet, but I feel comfort taking this risk. My daily quality of life is better on it.

I did find a trial:

I hope they continue to study alternative anticoagulation therapy in APS!


No. I tried the samples but xeralto is not fDA approved for APS. It caused pain in,my legs from the thighs down so I was happy to get off the samples


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