LA Antibody and Antiphospholipid Syndrome

Hello everyone,

I'm new to this forum and I'm hoping to get some advice/hear about the journeys of others with APS (and/or lupus). I have lupus (SLE), diagnosed about 11 years ago. In 2017, I started insisting that my rheumatologist test me for the three primary antibodies that people with APS test positive for (1, 2 or all 3). I insisted on this because in 2016, I lost my Mom to Catastrophic APS. She was misdiagnosed with Crohn's at first. She developed a blood clot in the spine and became paralyzed from the waist down. Then there were the blood clots in the back of both knees and the subsequent amputations. The stage 4 bedsore and on and on. The only other autoimmune disease that she had was psoriasis!

Of course, now I know that you're not considered to have APS until you test positive for at least one antibody AND have a thrombotic event. I've also learned that you can't get any treatment until you have a thrombotic event. This is incredibly frustrating to me as I want to prevent a thrombotic event. I don't want to go through what my mother did. And according to the literature, about 40-50% of people with lupus will develop APS.

For the first time, I tested positive for the lupus anticoagulant antibody in January of this year and again in April. I have an appointment with a hematologist that apparently has a fair amount of experience with APS, but his first available appointment is in January of 2024! Has anyone else out there tested positive for the LA antibody? If you have, did you then develop APS? Do you have lupus too? I'm taking a baby aspirin daily as it's all I can do. I'm trying to just get on with life and have been mostly successful in that, but this is never far from my mind. If you're of a mind to, please share your story. Any advice, suggestions, comments are most welcome, thanks!

-Keri