Deep Vein Thrombosis (DVT) Support Group

Deep-vein thrombosis, also known as deep-venous thrombosis or DVT, is the formation of a blood clot ("thrombus") in a deep vein. It can be caused by something preventing blood from circulating or clotting normally. Join the support group if you are coping with DVT and find others who are going through the same challenges.

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Factor V Leiden and lifetime coumadin

amelhu
amelhu
I have been on coumadin for 8 months now and my ultrasound showed that my clot is still unchanged. I really want to get off of coumadin, but now my dr is saying that I'll be a life long coumadin patient and she says its because I"m FVL. I asked the nurses and PA's if they have ever known any patient who were FVL who were able to come off of coumadin and they all have said no.

Is there anyone out there who is FVL who has come off of coumadin? What is the secret?
JEB2007
JEB2007
I'm off! I was on for 7 mos and came off over a month ago. I think we've talked about this before though. If not, message me.
deleted_user
deleted_user
If youonly have FVL and no other crazy genetic stuff, there isno reason you should be on it for life....I've talked to many docs about this. Your clot will always be there to some extent, but by now it is attached to the vein wall and it won't move.
deleted_user
deleted_user
I don't have any of the factors but my clot remained unchanged after 8 months and I was told to stop coumadin. Good luck!
deleted_user
deleted_user
I have factor v leiden and I am on warfarin for life. I have argued, cried and threatened to stop taking warfarin and they said i have to stay on it.

If you think about it, FVL is a disorder that makes your blood clot too much, and taking warfarin helps get rid of excess clots. If you take away the warfarin it will take away the 'protection' and blood clots will run freely in your body and who knows what will happen. The body is still going to produce the clots and if you take a warfarin a day it will protect u from DVT and PE, and more importantly death!!

Think about it x
JEB2007
JEB2007
Being on coumadin doesn't necessarily keep you from ever clotting again, I'm sad to say. It does lower your chances, but we also have protective factors already in our body that tell your blood when to quit clotting. For those of us w/ genetic mutations, those receptors don't work as well. i.e. - there are no clots just whizzing around our body to turn into a PE at any given moment. And thank goodness there aren't! :)
Nurses and doctors at one place will tell you to stay a lifer, go to another office and they'll take you off. Part of the unfortunate side effects of FVL being such a new medicine.
deleted_user
deleted_user
I have FVL and I am off. I was taking coumadin for six months, but the clot is gone.
deleted_user
deleted_user
I should add that I do take an aspirin each day.
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