Deep Vein Thrombosis (DVT) Support Group

I know I keep going on about injecting instead of Warfarin, but I had many of those side effects & swapped anti-coags, and life improved considerably for me.
There are lots of other meds available, I'm hoping it isn't a case Warfarin or nothing for you, because I'd worry if I wasn't on something.

I'm FVL hetero, had two DVTs in the same leg, at the same time. Took coumadin for 7 months, and have been off it for almost 5 years. It's totally do-able!

If I clot again, I'll probly be a lifer, but having FVL doesn't guarantee that sentence. Coming off the meds was the right decision for me, but you have to do what your'e comfortable with, and what your health will allow.

That's the thing. I was in good health and felt good until I started with Warfarin. I have not felt good or normal in 8 months.

Jocco,

Did the doctor tell you if you were Heterozygous or Homozygous for FVL?

Normally a single clotting incident does not result in life long coumadin. Here are several resource articles for your viewing pleasure. The first article discusses length of treatment based on cause of clot and other associated risk factors:

http://patientblog.clotconnect.org/...

http://circ.ahajournals.org/content...

I am on life long coumadin after having two separate DVTs. For me, I have felt very little side effects of being on Coumadin outside of the slight fatigue. To combat the fatigue, through recommendation by my doctor, I started taking B12 and B6 vitamins which have helped a lot. Of course, everyones body processes the Coumadin differently so how it affects one person may affect another differently.

Other sources of information:

www.clotconnect.org - part of the University of North Carolina's Blood Clot Outreach Program run by my good friend, Dr. Stephan Moll.

www.stoptheclot.org - a organization I co-founded back in 2003.

R/
Tom

Tom,

Thanks for the links. I will have a read. I only have FVL from one side.

I read through the articles and still don't have a good feeling. I had a DVT in the calf area. I was stomping branches in the back of my truck earlier that day but I can't say that I had a specific injury. From what I read since I am hetero with no specific cause so the risks of recurrence may be fairly high. I guess I will have to figure it out...this blows!

I had the follow up appt. last week and just as I thought the Hemotologist said the decision was mine on whether or not to stay on the medicine. About a month ago I switched to prescription Coumadin based on many things I read about differing side effects. I don't notice any real difference. The doc did say that in addition to the DVT in my calf that I had a superficial clot in the vessel at the inside of my thigh. (just above the knee). Supposedly everything is now clear but he did say that the superficial clot is one I should consider while making my decision. I am not really sure what to do. I don't feel "good" hardly at all any more but I know if I get another clot it could cause major issues. Is this just another case of what is worse....the medicine or the cure?

Just a typo...is the cure worse than the disease?

I had an extensive DVT in the groin to ankle of my left leg. I did 9 months of Coumadin and then went off it (I wasn't diagnosed with my FVL yet). I was on birth control, smoking, and still clot-free up until I got pregnant with my first child. That was about 6 years of no clots. (As a side note, I obviously quit smoking to get pregnant and never started again.) After I had my son via c-section, I had another DVT before we'd even left the hospital. They put me back on Coumadin for another 9 months. Within a month, I had another DVT. That's when they diagnosed me with FVL, and I've been back on the Coumadin ever since, only switching to Lovenox when pregnant with my second child (no DVTs after that one, thankfully).

I would definitely say it's possible to be off Coumadin and not clot. Like JEB2007 said, though, after the second clot, it was no longer an option to be Coumadin-free.

I definitely have many of the side effects of Coumadin, but at this point, even if my doctor was okay with it, I'd stay on there, just because I'd otherwise always be freaking out and thinking I had another DVT. My sanity is worth every side effect Coumadin has to offer. But going off it for those years that I did is not something I regret. It was the right choice for me at the time.

I have Protein S Deficiency and had 7 years between DVT's. I am now a coumadin lifer and have severe Post Thrombotic Syndrome caused by the 2nd DVT. Someone asked me if I could go back in time, would I have just stayed on coumadin and not be dealing with the misery of PTS? My answer was during those 7 years I did many things that I probably wouldn't have done if I was on coumadin. For the enjoyment I had doing those things I have no regrets.