Lppgh, l am so sorry that l cannot help you with your problem, but l have a stupid question. Does having the lupus anticoagulant mean you have lupus? Please accept my best wishes for your good health.

Thank you Orchid16. My hematologist advised that it did not mean that I have lupus, but most people who have lupus have this anticoagulant in their blood.

I am also awaiting the second blood test (12 weeks from the initial blood test). Like you, I was told that I would need to stay on thinners if the result is again positive. But, as you mentioned, the test can yield false positives. So... here's hoping for the best. For both of us. Sending you good thoughts.

Thank you "gratitude." I wish that for both of us, as well. Please let me know how it works out for you.

I tested positive for LA. I also have antiphospholipid antibodies and beta 2 glycoprotein. Basically, I have extreme antiphospholipid syndrome which, if you have another positive LA, is what you'll be diagnosed with. Aps can be primary, meaning it's the only disease you have or it can be secondary to lupus. You can have LA and not have lupus. They'll probably test you for lupus though to rule it out. You may also get a rheumatologist who may prescribe hydroxychloroquine aka plaquenil. This is a rheumatoid arthritis and malarial drug but it helps prevent the binding of proteins in your blood. Also, if you end up trying positive for lupus, it helps to protect the disease from attacking your kidneys. Any other questions please feel free to message me.

There was a similar inquiry not long ago.
http://www.dailystrength.org/c/Pulmonary_Embolism/forum/19310429-anyone-antiphospholipid-syndrome

My sister has lupus (SLE), but has always tested negative for lupus anticoagulant (she gets it drawn with her periodic routine testing). I, however, have an "inconclusive" LA result. Five times. It's too risky to take me off warfarin with my exceptionally strong family history of DVT/PE (both parents, both grandmothers, assorted cousins, etc.), so we've just quit testing me for it. To my understanding, it's not at all unusual for people with lupus to test negative for LA, but to have relatives who test positive for LA and don't have lupus. Weird, huh?

The truth is that LA really has nothing to do with lupus itself--it got the name because people with SLE who had increased clotting tested positive for this blood fraction, and it was thought to be a manifestation of the disease. It actually is more prevalent in the population of people who have SLE, but not because it causes lupus. It is theorized that SLE may somehow "activate" this factor in the blood, but that there may also be other "triggers" that can cause someone to develop a positive LA test. Those with positive LA who go on to be diagnosed with SLE are mostly thought to have been undiagnosed early-stage SLE cases, where the LA was activated before the other symptoms became noticeable, or those poor souls who had their SLE missed out before their clots.