Thoughts about Xarelto and APS

I was put on to Xarelto in Hospital after an unprovoked jugular vein DVT. Initially treated with heparin. As it turned out I eventually tested positive twice to the drvvt test so APS confirmed. At the same time diagnosed with SLE due to other issues

My thoughts are that warfarin treats other symptoms of APS such as brain fog, 'vertigo' etc and I read here that people feel 'better' when their INR is say, 3.5. Now Xarelto does not impact on INR, it does not thin the blood as such it just prevents clots forming. So essentially Xarelto does not treat other symptoms of APS, just the clot issue.

Did the recent study look at such issues? Clearly the clot development risk was addressed but we all know there are other associated symptoms with APS. Have those been ignored? Maybe even a low dose aspirin might be helpful. Be keen to get some input here.

15 Replies

  • Xarelto (Rivaroxaban) was the drug used in the RAPS study which you can read in its entirety on the right of this page under "Pinned Posts". As such it was deemed as a suitable treatment for those who have had a venus clot ONLY with an INR 2-3. Anyone who has had an arterial clot or needing an INR higher than 3 would not be suitable for this drug and should not be prescribed at this point.

  • I should add that the mere fact that someone was on a low INR was probably because they were not symptom heavy in the first place perhaps and therefore it is not a good judge of if the medication can deal with that side of things. The trial simply looked at clotting recurrence, so Im not sure you can compare it with warfarin with respect to the question you are asking.

    In a previous question on here you said they would check your INR in December - they won't because you are not on warfarin! Xarelto (Rivaroxaban) works differently to warfarin so you will have a normal INR as anyone who doesn't take anticoagulants.

  • Hmmm, maybe my brain fog but I knew I wouldn't have my INR rechecked in December - maybe I said that, but really meaning having the APL's rechecked. But I do have other symptoms - balance, brain fog, livedo, which would not be addressed by Xarelto but would be addressed by warfarin. Hence my query.

    As I mentioned in the OP, Xarelto doesnt thin the blood but maybe that is what I needed.

  • My doctor recently told me thing are looking up as far as the Xarelto type meds! He thinks that eventually we will be able to use those drugs soon, but that makes no sense to me after what I just read from notsofab! When will they get us right! I was diagnosed with fibromyalgia many years b4 APS! DONI REALLY HAVE FIBROMYALGIA OR WAS IT APS ALL THAT TIME! From what I've told my Hemotologist about my medical history as a child, having JRA and all these crazy things that I got at young age, he said I probably had it my whole life! Also I've had FUO's for years!!! Fevers of unknown origin! I get fevers for no reason and always know when I have a fever! Does anyone else get weird fevers of unknown origin? I find the USA backwards wen it comes to APS! Oh well cherrio and have a wonderful Holiday Season!

  • "blood thinner" is just a common misleading name for anticoagulants, they don't actually "thin" blood in the way you would thin paint. Warfarin is an anticoagulant, so is heparin / LMWH, so is Xarelto. Warfarin acts in a roundabout way (why it takes several days to work and is difficult to control) by reducing VitK which then reduces the body's ability to create various clotting factors, while LMWH and Xarelto both inhibit clotting factor Xa directly.

    INR can still be measured on Xarelto but doesn't tell you anything - like adding a fuel tank and a fuel gauge to an electric car, sure it tells you fuel level but it just isn't relevant to how far you are going to get. There are lab tests that can tell you sort of the same thing as INR when on Xarelto, but they aren't used because Xarelto has predictable pharmacodynamics so they aren't needed.

    Regarding symptoms, it is worth remembering that while Xarelto works very differently to Warfarin, it works the same way (roughly) as LMWH, which is used for APS for "topping up" warfarin, instead of warfarin during pregnancy, when bridging for surgery, and long term for some patients. Prof Hughes' team (and maybe others) use LMWH trials to determine what level of anticoagulation will bring relief of symptoms. All of which shows that there is nothing special about warfarin in relieving APS symptoms, it is anticoagulation that is needed.

  • Thankyou. That is really helpful. Does aspirin thin the blood or is it too an 'anti-coag'' also?

  • Aspirin and Plavix/Clopidogrel are regarded as blood thinners too, they act on the platelets and make them less likely to stick together, they are not as "strong" as Heparin/Warfarin/Xarelto etc. They are not usually regarded as adequate anticoagulants for APS when there is history of clotting, but they have been shown to be (arguably) as good as Warfarin at preventing repeat clots in patients who _don't_ have APS.

    I was put on Clopidogrel after TIA/mini-stroke, and felt fine on it, but once APS tests confirmed (which takes a few months) the doctors insisted I had to "upgrade" to warfarin - since then never felt as well as on Clopidogrel.

    These drugs _are_ also sometimes used for APS in people who have other symptoms but not large clots (DVTs, PEs, strokes etc.), and they do appear to work for some people, which suggests that APS is symptoms are all about clots and it doesn't matter which part of the clotting cascade you target. On the other hand, I have also heard of some people who are on a combination of e.g. Warfarin and Clopidogrel.

  • Love your comparisons of electric car and fuel tank,... bravo, well done and easy mediphor to understand! Too shay!

  • Hi all, first time poster here.

    To the OP I too wonder about the question you posed regarding Xarelto. Sorry I can't answer it but here's my experience which I hope is useful to you.

    I'm disgnosed with primary APS (mostly multiple infarcts), lupus like symptoms & Joint Hypermobilty Syndrome.

    I've been on Xaralto for the last couple of years. I'm stable but always feel mildly symptomatic on both Dalterparin and Xaralto. Additionally Xaralto exacerbates the existing reflux disease and I experience more migraines.

    I was prescribed Dalterparin injections & then Xarelto because I'm unstable on warfarin, just couldn't keep my INR at 3.7 (more like 1.3 - 9).

    I'm seriously considering returning to Dalterparin because I'm taking additional medication for the xarelto side effects but can't get them under control. There's a concern its not protecting my brain adequately but thos is not shared across my team.

    I suspect in my case, oral anticoagulants interact with my medications, especially the proton pump inhibitors & the reflux itself and compromise their effectiveness.

    Having my INR done three times a week was a pain but on Warfarin, my good days were really good and my bad days (imho) were recognisable and treatable.

    My local haematologist (who I greatly respect) wasn't willing to continue prescribing Warfarin because of the high INR's even though they were rare.

    So for me its Dalterparin or Xarelto both which have a sub optimal performance in my experience. I've been offered Apixaban but I hear it has a similar side effect profile to Xarelto.


    PS I also take Plaquenil which for me is effective for the mild lupus like symptoms I experience (skin blisters & mouth ulcers, arthralgia) but I'm also on other meds/treatments related to pain, nerve damage and allergies.

  • What is OP?

  • Original Poster

  • Plaquenil can have a lot of bad side effects , there is a post about this on the lupus pages .

  • Sorry the post about plaquenil is on Hughes site not lupus site .

  • I am currently on apixaban ( Eliquis) for my APS. I was on Xarelto for a bit of time before Eliquis. These both are part of the NOACs that are being prescribed for blood disorders. First, someone that is on warafin this med blocks 6 clotting factors or arrays in your blood. NOACs only block one factor in clotting array. That is the XA factor. The risk of bleed is actually higher on warafin than NOACs. Xarelto does "thin" the blood. If that is what you want to call it. They can check your med level with NOACs. It is not the typical INR test but the PT or prothrombin time. I had mine checked when I had a hospital stay back in February and was found to be in exactly the middle as far as range for this test. You have to try what is best for you. I too could not be put back on Coumadin as couldn't get regulated properly. I have no issues with Eliquis now. I did have issues with Xarelto and needed to be changed. I have heard of tummy troubles with Pradaxa especially. If you have preexisting tummy issues then I could see where certain NOACs could cause further upset. I hope everything works out with the best choice for you. 😊

  • My APTT is upper range on Xarelto. I guess it really is all about the clots which must be micro if they don't create permanent damage just symptoms. I'm also on a proton pump inhibitor as the lupus has created some hypomobility in the gastric tube. But that seems fine so far. Have also read that the proton pump medication when on Xarelto reduces the risk of a stomach bleed. I've taken the occasional low dose aspirin every couple of days and I think this seems to be quite effective in managing some 'dizziness'.

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