I think it's your choice. All your doc can do is make a recommendation. I find it curious when doctors recommend life long anticoagulation for an idiopathic clot but I know some doctors are more conservative that way.

Some people discuss low dose aspirin therapy with their docs vs long term warfarin so that may be a discussion worth having.

Would you feel more comfortable getting a second opinion from another doctor as far as continued Xarelto?

rmb I have talked to 2 docs and they are old school and maybe get a kick back from the pharm folks, who knows, but what I am reading is that for idiopathic clot life long anticoagulants are not needed if there are no risk factors etc..
I am going to see a yet another doc soon so may discuss with them or just quit and tell them what I did...

I agree, at the end of the day it's your decision. All we can ultimately do is try to make the decision which puts us at least risk.

Have you asked your doctors specifically why they recommend long-term treatment when your understanding is that you should be able to discontinue? It does seem odd to me, because even old-school, having had clots once didn't normally mean staying on anticoagulants forever. So I'd try to ask what they're reasoning is, let them know you're not feeling on board with staying on it, and then consider what they say so you can make a fully informed decision.

Side note, I just noticed you're from Cincinnati......me too! I don't live there any more, but it's where I grew up.

HI ShilosMommy,
I have lived here most of my life. I sure would think that with a large teaching hospital I could find some doctors who are more forward thinking. I would love to discuss vitamin therapy as apposed to drug therapy but so far nada...

I have seen some people here get the same recommendation.

Are all the docs you've seen from the same provider system? I do sometimes wonder if protocol is based on a general provider / hospital systems standard of care.

I don't know if xarelto is the same as warfarin in that you can just stop it cold turkey or if you need to taper off of it. Not sure. Maybe someone here knows, but you may want to tell your doc what you're going to do before you do it, just in case.

I don't blame you for wanting to come off the stuff at all

Xarelto doesnt work the same as Warafin and from what I have read on their web site and some reliable internet sources a taper is not needed. And the docs were not all from the same group but this is such a conservative place and not very forward thinking at all so this does not surprise me at all. I have to be my own advocate and read read, read,,,,

I have been off the Xarelto for 3 days and the heart palpitations have stopped and my joint pain is less. I need to send those folks an email and let them know about my side affects. Now if my hair will just grow back I will be set.

Just wanted to say, I had my follow up with the hematologist today 2 weeks after my hospital discharge. He mentioned the possibility of staying on the meds for life as well. They think it was caused by me being so sick and dehydrated with a stomach virus and in bed for 2 days then in a car for a 5 hour drive home even though we did stop 3 times. I didn't do more than step out of the car or go to the bathroom. He's concerned because my clots were so large for such a seemingly minor situation. I'll have a repeat ct in 4 months and we'll discuss it more then. I really don't want to be on them for life. :(