Xarelto or Warafin for APS?

Thanks for sharing. I have been on Xarelto for about 21 months & plan to go off around Nov 6 as 3 months post 2nd ablation. I will chew 4 baby aspirins if chest pain etc as do anyway or nitro. There are lawsuits on Xarelto and other negatives & with other med interactions. I also had a bleed in the hospital from incision not clotting that scared me as blood was all over.

I am elder in 70's but during these years have increasingly bad wrinkled Crepy skin more like person in 90's. Has an anyone else noticed massive thinning wrinkled skin from blood thinners like Xarelto?

Hey, did you ever make the switch from Eliquis to Coumadin? Just curious, thanks!

I had an ischemic stroke in 2015 at age of 36, no pre-existing health conditions or family history. At that time I was diagnosed with a PS and the treatment was warfarin until 2019 when the antidote for Eliquis became widely available, and the price had dropped to make it more reasonable. Since that time I have been on aspirin with low-dose Eliquis, 2.5 MG morning and night. I have been event free since 2015 when I had the initial stroke. Last week when they recheck my antibodies, again to confirm I have primary APS, which means I do not have lupus, I was informed by the hematologist at the standard of care for APS has changed as of 2023. They are now wanting to put me back on warfarin, which is frightening for me. I did not have a good experience, it was difficult to find the right dose for me, it often meant a different dose each day with frequent changes at each INR testing. All of the weekly post were quite a bit for me to manage, and also fracturing in the dietary and Pharmaceutical interaction strained with warfarin. I have really enjoyed being on Eliquis. Additionally, being a female who has not entered menopause, warfarin is very challenging to take and caused my menstrual cycles to be so heavy that I became anemic to the point of needing infusions and your blood transfusions. One benefit we found Eliquis was that if I needed to pause during my menstrual cycle, I could. Right now I’m factoring in all of this information and working with my hematologist and others around the country to determine the best course of action. Since I’ve been free since 2015 and doing well on Eliquis since 2019 is there truly a need for change? It is true that according to clinical trials warfarin is the gold standard and should be used, it also gives a very black-and-white indication of whether or not you as a patient are protected from a blood clot through the INR testing. That said, the same studies that show the benefit of warfarin over Eliquis are all within the last few years. This means it’s not clear how long the subjects have been event free upon entering the study, for example, have they been within the first one to five years of a blood clot and they had a reoccurrence during the study is it able to be compared successfully to someone such as myself who was on Eliquis for six years and warfarin for four years with no event?

The sad reality is that so few of us have primary APS, the lack of lupus, that there aren’t many studies around our particular situations. This is actually true for all of APS population, which is troubling Indeed because the guidelines in the treatment have changed so frequently that I certainly appreciate The thought leaders in the industry working to streamline the standard of care to better than let’s say “control”. for lack a better word-the studies in the outcome going forward.

Of course, that doesn’t help individuals such as myself, who currently feel torn between the gold standard care warfarin versus that of Eliquis.

Looking for support and certainly willing to hear more from the community and share the details of my journey as it continues.