Is anyone on Xarelto for APS? Doc sw... - Hughes Syndrome A...
Is anyone on Xarelto for APS? Doc switched me from Warfarin to that plus baby aspirin. I have had 1 DVT. INR was not stable.
Hi KathrynKK: I am not taking Xarelto for APS but here is what I pulled up from Google for you and perhaps you can find more of an answer in some of these sources. If not, I am so sorry. It's another very new drug.
Warm wishes,
CanaryDiamond10
i do.....as consultant prescribed it as warfrin didnt work after 5 yrs of takin it succesfully.... my inr was constantantly out of range (too low) n fragfmin injections were no go 4 me...... i feel gd on them.... bn on it nw 4 3 mnths......
i know its in trials at mo bt consultant doesnt hav many other options and thinks it cld work 4 me..... i hav had previous dvts and p/es.......
I guess I did. Didn't realize it. Hopefully it works for me. I love not having restrictions on my diet. I also didn't realize just how much hair I was losing on the warfarin. Hope I don't have to go back to it ever.
KathrynKathyKate, are you in the UK? Just wondering about Xarelto for myself at some point as certainly don't want either warfarin or clexane jabs. Are you able to say who your doc is? Or PM me if you don't want to go public. I see Prof K both at London Bridge and Tommy's. Thanks.
I have been recently diagnosed with primary aps. The only symptoms so far have been several superficial clots in my left leg and a clot on the retina of my right eye. Not sure if those are related but I have not had clotting issues before the past year.
My internist put me on 20mg Xarelto about 4 weeks ago. At first I noticed a bit of stomach discomfort at night in bed which seemed to subside after a few days. However, a couple of weeks later I just didn't feel all that great and started having more stomach discomfort. So much so that I stopped the Xarelto and started taking just an 81mg aspirin. Within 24 hours I felt much better.
I have an appointment the first part of June with a hematologist and hope to get this figured out a bit better. My diagnosis was based on a couple of high numbers in the anticardiolipin test. What surprises me is that the numbers were very borderline, just a point or two above the high end of normal.
Just to reiterate again - these drugs have not yet been trialled for APS and are therefore unsuitable at the moment. Here's the article from the HSF newsletter:
Rivaroxaban and APS: update on the London trial
One of the most common enquiries our charity receives at the moment is whether the new oral anticoagulants are suitable for patients with antiphospholipid syndrome.
The new oral anticoagulants (NOACs): dabigratran (trade name Pradaxa), rivaroxaban (trade name Xarelto) and apixaban (trade name Eliquis) are being promoted as the replacement for warfarin.
They are direct thrombin inhibitors which work in a different way to warfarin, but still thin the blood and help prevent clots. There are plus points to the NOACs as there are fewer side effects, including no interactions between food, alcohol or other medications, and your INR does not need to be monitored.
However, although the NOACS have been licenced in the UK by NICE for conditions such as atrial fibrillation and to prevent DVT, they are NOT considered suitable for patients with APS until sufficient trials have been carried out.
A trial is taking place in London led by Dr Hannah Cohen of University College London and three co-investigators: Professors Hunt, Khamashta and Machin plus several expert collaborators, which will study over 150 patients to see if rivaroxaban is as effective and safe as warfarin.
Funding and ethics approval for the trial have recently been approved and recruitment is taking place now—if you are an APS patient at either St Thomas’ Hospital, University College or Imperial in London your consultant may ask you to join, depending on whether you match the strict criteria.
The trial itself will last for six months, so it will be about a year until the findings are published. If they indicate that rivaroxaban is safe for APS patients, it may mean that some people will be able to switch from warfarin; on the other hand, the trial may suggest that it is safer for APS patients to continue to use warfarin.
