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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thor37 09/14/2013

Hey good afternoon everyone,

Hope all have been doing well.

Quickie question, if you test positive for Factor v, just one protein.
What is the protocol, are you supposed to be a lifer on warfarin. Is that the deciding factor to testing positive, even if... you just had one clot.

If you could give me your opinion, or rather your experience. I'm heading into unknown territory. And i need some, been there, done that, advice.
Please and thank you.

warm regards,
thor
;)

deleted_user 09/14/2013

If you have clotted once with hetero (1 gene) fvl, the docs usually put you on 6 months of Coumadin. After clot #2 you get placed on lifetime. It does vary from doctor to doctor. The person who can give you the best advice for your own situation would be you hematologist. This is a great place for advice, but always go to your doctor for real medical advice.

JEB2007 09/14/2013

I have FVL hetero and had only seven months of coumadin. Have had no additional clots in six years (and, Lord willing, for my lifetime!).

Standard treatment is six months on coumadin and then lifer after a second clotting event. Depending on other factors, your doctor may recommend longer anticoag therapy time. It varies from person to person, just like our clots and recovery does. If you don't have a hematologist to help you, I recommend finding one. They are a wealth of information!

jan11965 09/14/2013

My mom is hetero for FVL and clotted once decades ago before they even knew what FVL was. She did her 6 months and has never clotted again even though she has had multiple surgeries and cancer. My sister is hetero and has never clotted. She did go off birth control when she found out but that has been the only intervention. I'm hetero for FVL, have clotted once but am a lifer. That is because I also have APS.

jerry1976 09/16/2013

That's a tough one, Jan. To have APS and Factor v. Are your doctors keeping you on a higher INR level? I think you responded to my question in the other topic I posted last week. Thanks for your help.

luckymommyto2boys 09/16/2013

My friend has had just one clot on FVL, and after her 9 months on Warfarin (her clot was on her brain stem, so they went a bit longer), they just put her on an aspirin a day.

jan11965 09/16/2013

Yes, for APS my range is 2.5 to 3. Used to be 2.5 to 3.5 but trying to keep it a little lower.

jody0385 09/17/2013

My INR range is 2-3 on coumidin for 6 months (just had my clot first week of August this year). Just had my dr. visit first one since being in ICU.

He said to me that the chances of a second clot go down after year 2 from the original clot. Your dr. will be able to educate you on your situation. Mine had no trigger and has baffled my dr. I too am F5 with 1.

After a month on coumidin my doc wants to change me to xoreltol (I have no clue how to spell it LOL)

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