Has anyone considered switching from Coumadin to Xarelto? What's been your experience? (Saw some year-old posts but hope for updates.)

[ASigmon]

I have primary APS diagnosed after a stroke. So I'm at high risk for another. I've done fairly well on Coumadin (but with a couple of serious bleeds). My hematologist is suggesting I switch to Xarelto but I'm nervous about it. need to make a decision next week. Has Xarelto been approved by the FDA for APS patents?

[KathrynKathyKate]

I was switched last summer by my primary care doctor. I called to get my hematologist input and he told me that is was not approved for APS and that I had to take baby aspirin with it. I finally saw a rheumatologist and she was not happy at all that I was on it and not Coumadin. I agreed with her, I wasn't convinced I should have been switched and told my doctor so. I told him about all the information online about it and he basically told me the info was not accurate. I went back to hematologist whom now agreed that Xarelto was correct treatment but was concerned about a bleed because of dose with aspirin. Went to another hematologist for a final opinion and he told me I need to be back on Coumadin that Xarelto is not correct treatment and since my dose has been decreased from 20mg to 10, I am not being protected. Long story short, Xarelto is not approved for APS and I'm going back to Coumadin. I will miss the dietary freedom though.

[Mair]

Since there is no blood test like the INR to measure the effect of Xarelto, you really don't have a way of knowing where you are as far as theraputic level of anticoagulation. And unlike Coumadin, if there is a bleeding episode there is not a way to quickly reverse it. It's terribly expensive and most insurances are not covering this class of meds well yet. This, in addition to the above reply that the FDA has not approved it for APS because there have been no studies and there are unlikely to be any in the near future because there are not enough APS patients to justify the drug companies putting money into a study for us.

[lovenoxmom]

I have primary aps as well. Have had 11 clots in my brain, one in portal vein, one in messenterric artery. I had been on warfarin, high dose 12.5-15 mg 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 last month.

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. Every body is different, and ive been on every anticoagulant known to man at some point in my life, this seems to work for me so far (guess until I stroke out, I wont know for sure, right?). 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: controlled-trials.com/ISRCT...

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