My doctor suggested to switch me from Warfarin to Xarelto because we cannot keep my INR stable. Is it yet approved för APS anywhere?

I have read your posts about this but find many of them being old, perhaps there is some later news? I am a bit worried about changing, I did meet a reumatolog who was questioning if this was a good idea since I am feeling quite well on wafarin and i now planning to try INR self-test instead... Anyone who knows where to find the latest news on Xarelto and APS? Do you have experiencies from swiching?

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  • Hi sorry I have no experience of Xarelto and hope you don't mind but in a way I'm latching on to your question. I was on warfarin and felt loads better than I had going back over the years (and first time my blood results were negative or normal, not got all to hand and don't always remember them all) but I started with seizures then ended up in A&E in Feb and my INR was down (due to neurologist not taking account of new the new seizure meds that had issued). The result they decided to give me some Tinzaparin in addition to warfarin, but have now stopped the warfarin and left me injecting.

    I'm sorry to latch on to your question but interested as it refers to different meds for same thing and keen to see people's replies.

    Hope you aren't offended and apologies as maybe should have posted separate question but if I'm tagged with you I can also see what people think of your changes.

    Hope it's ok.

  • Hi! Feel free to join :) If I understood you are now on seizures med and injections. I have understood that many people is better of on injections than on wafarin. I am ok on wafarin most Days but INR is going up and down like crazy... target 3-4 seems to be working for me. Have not been clotting since 2008.

  • Sorry but, no, rivaroxaban is not yet approved for APS

  • Thanks! I am not surprised... I will Give it some more time intill I change. /Annica

  • Hi, I have something to add. When i was first diagnosed i was put on warfarin and experienced the wild fluctuations as well. When i finally got to see a hematologist she said the normal INR testing isn't working, you will get better results if you have the factor X testing with APS. I was also still clotting so she put me on tinazaprin, but had i stayed on warfarin she would have done the factor X for more accurate results. looked up Xarelto and the thing that worried me (for you) is it says in the event of bleeding from too much, there is no way to reverse that.

    Now i will tell you something that i do not recommend anyone copy (but i believe every APS person on warfarin should at least know) I was on about 10 mgs of warfarin most of the time and that's where i felt the best - everyone will be different because our livers will metabolize differently - I got sick of the fluctuations and just kept taking 10 mgs whether my INR was 2 or 6. My rheumy phoned me one day and said this is the best I've seen your levels, what have you been doing differently? Of course I told her the truth and she literally gasped! lol... it's not that our blood is any thinner or thicker, it's just that that particular test doesn't work the best for us APSers. So maybe take this information in to your doctor and have her consult with a hematologist and I can almost promise you it will be better, but please don't take the route I did, it's dangerous.

  • Ok. Thanks :)

  • I have made the switch btween warfarin and xaerelto....... I find the new drug wonderful and so much better.

  • Is there a generic xaerelto and why is it better? Thanks so much.

  • Great to hear! How long. where you On wafarin and how long since you swiched? Wich antibodies do you have? /A

  • l was suppose to be part of test group with Rivaroxaban here in Canada still considering it not sure if l will yet.

  • Ok. Tests going On in Canada then. Thanks!

  • also called rivaroxaban

  • Yes i believe Xarelto is a brand name... Thanks.

  • Alicia, As has already been stated, none of the newer oral anticoagulants has been approved yet for APS. There is at least one research study currently investigating this (in London--rivaroxaban in APS trial). It seems that for the APS patients who have taken it (for various reasons) that some do fine, but there are definitely some who have not done well. I also had extremely labile INRs on warfarin and did not really consider it a safe option for that reason (plus it did not work that well for me). Another option you might consider is LMWH which several of us on this site have been taking for several years. For me, not only is it much more effective, I consider it to be safer given that like you I had very labile INRs. LMWH, like the newer oral anticoagulants (which are just the pill form of LMWH) also does not have a reversal agent. Protamine, which is used to reverse the older unfractionated heparin, is minimally effective for LMWH. Both LMWH and the newer oral anticoagulants have a much shorter half life than warfarin, however, so if there is a bleeding episode even without a reversal agent they will be out of your system relatively quickly. LMWH has a shorter half life than the oral agents (about 3 hours for LMWH vs 8-12 hrs for the oral agents)

  • Thank you. I Will try coagucheck and self test for a while anyway.

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