Log in
Sticky Blood-Hughes Syndrome Support
9,032 members9,038 posts

Doctor, can I take Xarelto® instead of warfarin to treat my blood clot caused by triple-positive antiphospholipid antibody syndrome (APLAS)?

No. Patients with a blood clot caused by APLAS who received Xarelto® developed more blood clots that caused strokes and heart attacks than patients who received warfarin. Warfarin remains the best treatment for most patients with APLAS.

Author Details: Carolyne Elbaz, MDCM

plus.mcmaster.ca/ClotPlus/A...

21 Replies
oldestnewest

Hi and many thanks for this !

Why is the INR as low as 2.0 - 3.0 in the text, especially as they are triple positive. If we shall not have a stroke or heart attack I have learnt that we should at least be over an INR of 3.0........ or even higher to be compared with the effectiviness of an oral drug.

Kerstin in Stockholm

3 likes
Reply

Varies from person to person, I am glad I am only on 2-3 I generally feel worse when higher and I haven't had any more strokes, yet. I am only single +ve, and not high, though.

I too have suspicions about the TRAPS study using 2-3 for "high-risk" triple positive patients. I think they had recruitment problems as never reached target numbers for statistically valid results. I also think some of the authors are the same as the earlier studies that found that 3-4 range gave worse results than 2-3 (which British Haem guidelines are based on) - this may be why they used 2-3. Strongly suspect there are other faults too - the bleeding endpoint results are anomalous too.

If there is much crossover between these studies then if you distrust the studies that show 2-3 is better then you should also distrust TRAPS...

1 like
Reply

I was surprised to see there were more bleeding events on the rivaroxaban than the xeralto.

I was told by an APS Specialist that a plus for a NOAC over warfarin is that it can be prescribed at a higher intensity with a reduced risk for bleed.

Of course I personally failed a NOAC trial at a far higher dose than used in this trial immediately. Having failed warfarin, it was a sensible approach, and given the same set of information ( it was October 2018- TRAPS/ RAPS ) I would make the same decision to trial Apixiban at a very high dose again. It was worth a try.

I never had a bleed on extreme high doses of Apixiban.

I am back on warfarin, and my body feels far better on it. My neurological symptoms and Actual DVT’s are handled far better than on a NOAC/ DOAC.

I was very disappointed... I was really looking forward to a tablet twice a day opening up my world...

1 like
Reply

"No. Patients with a blood clot caused by APLAS who received Xarelto® developed more blood clots"

In one study, yes. In another larger study... no, they didn't, but they did have a significant improvement in quality of life. The key to which study applies is "triple positive"... which the doctor doesn't even mention in their answer. Did they even listen to the question?

1 like
Reply

They would have better quality of life if they are just popping a pill and dont have to consider diet, which for most is a huge inconvenience. I have a better quality of life sticking an injection in once a day! I dont think its relevant.

The problem with these studies is that they only answer the questions that are asked and the pool of patients that are used are not always equal.

As for this "triple positive" thing, I am now triple positive to some people but to others I may not be! I have tested positive to all three of the antibodies. Were they consistent, no, were they at high levels, not always. There are a lot of conclusions that are drawn from quick studies that dont run long enough, dont use enough people and frankly are biased in more ways than one.

1 like
Reply

Your answer is so comprehensive, Lynn. It captures the essence of the larger issues.

Reply

Way I see it, quality of life will also account for non-clotting APS symptoms which some (not all - I don't) of us have. Many see those symptoms as indicative of inadequate anti-coagulation (although I get the impression it is controversial with some doctors). The rivaroxaban group clearly didn't have the lifestyle disadvantages of warfarin, but if that is reflected in the QOL results, it means that wasn't balanced with day-to-day symptoms returning due inadequate anti-coagulation - ergo they were adequately anti-coagulated for non-clotting symptoms.

1 like
Reply

Good to know and see confirmation of this. What about eliquis for treatment of APS? Same answer or no...?

Reply

If you are triple positive, the answer is no.

If you are an arterial clotter, no.

Apixiban is a better choice than Rivaroxaban for APS patients per my heme (who was on the original Rivaroxaban studies before it went to market.). There are still problems with it for some APS patients. It’s not understood well enough yet.

my APS Rheumatoligist trials a few criteria vetted specific APS patients on high intensity Apixiban ( up to 10 mg twice daily.) I was one of these patients and I developed DVT’s and arterial mini clots and and organ involvement immediately. This is why it’s a trial only.

The vast majority of her APS patients do well on Apixiban, but she is only running her numbers in a small isolated bubble as far as I am aware. She is not putting data in a meta analysis. Why? There is not one. Not with Apixiban being run this high.

I really like her approach. I love it actually. I’m glad she’s thinking in this way. I’m only disappointed it did not work for me. I do much better on warfarin despite its many flaws and limitations.

Reply

Mermaidatheart, I am triple positive and on Eliquis (apixaban). Before I was ever diagnosed I had pulmonary embolisms and deep vein thrombosis, and went on warfarin for over 10 years. I had crippling migraines and as a last resort my specialist changed me to apixaban and it has been great for me, reducing the headaches so my life is good. There is no one size fits all answer. You and your doc have to figure out your needs that are specific to you. Remember that apixaban and rivaroxiban are not the same and it is a mistake to lump them as one. While apixaban works well for me and my situation, we’re all wired differently. It is worth a discussion, in my opinion, depending on your needs :-).

Anita

2 likes
Reply

Thank you for you input!

Reply

Very interesting, actually. I did not state that I am only LA positive. My GP was thinking of asking my heme if Eliquis could be an alternative for myself, only because of the lesser amount INR monitoring needed. I have a home tester, so not really an issue. Honestly, I am reluctant to change my meds strictly for fear of consequences. My warfarin seems to work well.

So torn deciding which way to proceed...

Reply

If you have had a stroke, especially with no warning symptoms leading up to it, the dr that I trialed me on Apixiban, told me she would never recommend Apixiban. Let that help guide your decision.

Reply

I did have an ischemic (clot) stroke with no systems leading to it. I was a curious case as I am a non smoker, normal blood pressure, normal cholesterol, normal weight, active, I do drink wine..:).

Fortunately for me while in the hospital, my neurologist was the Dr that ordered the blood tests that determined my APS. This of course was confirmed with the next blood test.

I feel guilty at times when I read the many multiple issues that some people have on this forum. Strangely for me, since my stroke on Mother's day 2018, I have had no more headaches/migraines. My story used to be that I had a headache almost everyday of my life since 10th grade. Ibuprofen was my friend, carried her everywhere.

I still feel as though I am a curious case at times, yet I have balance issues, fuzzy brain at times, among others issues.

I love this site and all that I read, thank you to the administrators and all who share their problems. I truly believe the more we discuss, the more we learn.

My goal is to one day make a trip to England for an APS conference!

Reply

What anticoagulation-drug did you get after your stroke 2018? If Warfarin, what is your therapeutic level and do you have a Specialist today who knows APS well?

You say you are positive to Lupus Anticoagulant. Any more positive antibodies?

If your hometester works well, even when you are positive LA, and you have had doubletests in the vein to figure out if there is a difference between the two readings (fingerprick - vein) I do not understand why you should change from Warfarin.

As a matter of fact we do not bleed from this illness - but clot!

As you still have neurological symptoms (balance-issues etc) perhaps you should

increase the Warfarin-dose.

Reply

Warfarin: Tue & Fri 7.5. all other days 5.0. No other positive antibodies.

Have double tested previous, will do that again in June to make sure nothing has changed.

I have already informed my Dr that I want to stick with warfarin, as it seems to work ok for me.

Balance issues is a concern, thank you for the advice of increasing. My target is 2-3. I for sure know when my levels are off some how very quickly.

I trust my GP, my heme I like, but not his staff. Have not decided my level of "like" for him yet. GP is open to asking/answering all questions.

I live in Central Florida, so if anyone has suggestions for an informed heme, I would love to hear!

Reply

Glad this big decision is behind you :-). When everything is working well then there is no reason to change.

1 like
Reply

Amen

1 like
Reply

I think too low, as Kerstin says. ( with a stroke history- perhaps too low according to all literature.)

Reply

Dr Frank Lu was in Panama City. He was a solo practitioner on Jenks Avenue. He was a specialized consultant of mine. He was FANTASTIC! He believed in the Hughes method 100%.

Unfortunately he has passed away in his prime. He was in his 50’s.

Could you find out who might have taken his practice? What their philosophy might be re: APS? ( hi did not have a lot of APS patients...)

1 like
Reply

I will try to research that.

Reply

You may also like...