Susan,

I wanted to thank you for your research. You helped me too.

You also clarified some of my thoughts about what bothers me about this whole Coumadin thing. How there are no definative answers about who will clot and not. How we are on Coumadin because of the statistics and how it really is a numbers game. Some studies just have not been done to to lack of funding.

Pam

Pam, I'm glad that the research helped.

I understand what you're saying about Coumadin and studies. I'm not sure that I should have used the term "numbers game", though. I think it really is more of a risk of a bleed on anticoagulants vs. risk of a clot off of them. I am not a scientist or a statistician, so I don't understand where cut-offs are for studies that have been done, in determining who should stay on Coumadin long-term. You're right that studies have not been done for all conditions, and some studies that have been done may not be optimal in terms of conditions or number of subjects (which one of my doctos has pointed out to me for some research I have raised with him). But for some conditions, like LA, there seems to be a consensus that the risk is high for reclotting off anticoagulants. That still doesn't mean everyone with LA with reclot off of them. But the risk is high enough, apparently, that long-term use is recommended, and I think most patients would not want to risk another clot. Or to put it another way, in the previous study I mentioned, they would not want to risk that they would end up in the 30 percent group, rather than the 70 percent group.

I think it is frustrating that there are not more clear studies done, and that recommendations can vary among doctors. It also can be scary. In my situation, I was convinced that my DVT and PE happened because I was birth control pills and had taken a long plane flight. I had no underlying genetic factors (although my sister had had a DVT on BCPs as well). I did wonder what Factor VIII was and why it was high, but my doctor told me it was an "inflammatory marker" and that was all.

To make a long story short, I went off anticoagulants, then back on a maintenance dose because I did not feel well (in a DVT/PE sense), and it's likely I clotted again after a stress echo test (the symptoms were different than my first clot, and I didn't understand what was going on. But in describing it several months later, after months of fatigue and pain, I was told I probably had another PE). I did more research after that and discovered that some doctors and some research point to high Factor VIII as a high clotting risk (with one study saying that it had a higher recurrence rate than people with LA). And exercise, especially extremely intense exercise (such as with a stress echo) can cause Factor VIII to skyrocket.

So it would seem a no-brainer I should be on anticoagulants. But the doctors and the research don't all agree. Some studies say it is unclear. Some doctors don't agree on the research. And I'm in the middle, with no "expert" who can tell me what they think is best.

I do know one thing very clearly now, though. That absolute confidence that I had that once I went off anticoagulants I would never clot again, because I was off the BCPs and was not taking long plane flights, is gone forever. And once you cross over and become one of the ones that falls in the 30 percent, or 20 percent, or whatever it is in the research for your particular condition, you would do anything to stay out of that group again.

So please be careful, weigh the risks and the benefits, and seek out any experts there might be with your particular condition. That's about all we can do with some of these more "out there" conditions. That, and wait for research and genetic typing to catch up with what we have.

Susan,

You said it all perfectly!
Pam

Pam, I really have to apologize. I responded quickly in my last post, and I didn't realize that you have been diagnosed with LA. For some reason, I thought you had another condition which was not as clear-cut about staying on anticoagulants. (Maybe it's the brain fog from being on Lovenox? :-))

In any case, I didn't mean to go on about Factor VIII, when this is Elise's thread about LA. It's just all so frustrating, and so not helped by doctors in disagreement with each other or the research, or not up on the research to begin with.

Susan,

You are fine. Don't apologize. I find learning about the other clotting disorders fascinating. There could be alot of overlap. We can all help each other.

However, you opened up my eyes to the possibility that if I test again for LA the results may be in normal range. Not sure if you said this exactly but you brought up some good points and research and I took it further. I asked my doctor once about how much the levels fluctuate and he said no one has done the study. It got me thinking also that there are all these studies waiting to be done.

I don't have brain fog right now but I always rush too much. I have a 4 year old and six month old and never have enough time. I apoligize if my answers are always so rushed...

Pam

Hello Susan and Pamela,
I wanted to share some interesting information regarding the Lupus anticoagulant test. I spoke to a very helpful lady ( senior coagulation technologist) who shed some light on the test. I asked her what specific test was done to determine my result..she said they do a platelet neutralization procedure which currently the senior hemtologist/thromboembolism specialist at this hospital will be going to introduce a more thorough test as the standard test is known to cause many false positive results. She then asked whether I had the RUSSELL VIPER VENOM CLOT TIME preformed, which I did and it was negative. She said that the Viper test is far more accurate. I am currently waiting to get somemore information from my original hematologist (anxiously waiting) and I have sent a referral to a thromboembolism specialist as I think having a second opinion from someone who is very specialized is needed. As I get more information, I will definitely pass it on...once again thanks for all the help..