My experience with Xarelto after Warfarin...

[iwantsimple]

Just wanted to share that I have been on Xarelto for about 3 weeks, and either I'm having a big Lupus flare or most of my APLS symptoms have returned. I am back to sleeping 12-16 hours a day, my brain squeezies are back, my joints hurt (especially my right hip), and I'm even twitching again. I'm going to call my hematologist tomorrow (holiday in US today) and see about getting back on Warfarin. I HOPE that will take me back to normal...

[Salty]

Why did you go off the warfarin?

[lisakay]

I saw a new specialist in Chicago yesterday who told me to try Xarelto because coumadin is making my INR bounce all over. However after reading about this drug yesterday, talking with family, we have decided to wait awhile. I dont feel it is a safe drug...not yet anyways. I do wonder though why here in the USA, they dont recommend the injections?! They only do in the beinning as they bridge the coumadin. ALSO...trying to find a doctor that really understands APS and its symptoms is seeming impossible! SAD FACE

[lovenoxmom in reply to lisakay]

I'm in NV, and did the fragmin and lovonox injections for nearly 3 years after a clot in transverse sinus of brain and TIA. Before that we couldn't stabilize my inr anyhow. Insurance will cover it IF the doctor can justify it, but many doctors don't appeal. Although you are right about it mostly being used for bridging.

[iwantsimple]

It is no better on the west coast, Lisakay. I have docs at UCSF Medical Center, and it took me three years to find one who seems to get it. I'm ready to put in a call this morning to see about going back to Coumadin. I was offerend Luvanox shots for a bridge, but otherwise, only Coumadin or Xarelto. I don't really want to give myself shots, anyway...

[Hidden]

About 5 years ago when on coumadin my internist had trouble controlling my INR. Since then I have been on Enoxaparin (Lovenox). I'm in Baltimore, Maryland.

[lovenoxmom]

I'm grateful you shared this iwantsimple!

My narcolepsy issues have doubled in the last six months. I hadn't even made the connection between that and when I went off Coumadin.