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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
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APS...I had a stroke in my eye then diagnosed with Lupus Anticoagulation. I have a Hematologist but no additional meds for blood issues. Carotid artery ultrasound just showed 50-70% blockage left side. How to prevent more is the question?
kestrel123, I hope you get my comment since you posted over a year ago. I am in the process of seeing a Hematologist for antiphospholipid syndrome. I had antiphospholipid antibodies in my recent bloodwork. I have not had a detectable blood clot. I understand you can have smaller clots that would pass through without any other symptoms. The hematologist said that another test for the antibodies has to be done in 12 weeks to confirm the diagnosis. He said that without an actual thrombosis they do not diagnose APS , it is just that you have the antibodies in your blood. Like you I found that a little unsettling. that you have to have a thrombosis before they will diagnose the syndrome. I too take a baby aspirin every day. What has occurred since your post. Have you been to a hematologist? Have you had any blood clot events?
I was also diagnosed with SLE and APA. I haven't really had many major problems due to the SLE. But, the APA, a different story. I lost 6 pregnancies in the 2nd tri., finally my husband said he had enough and my tubes were tied while I was still under anaesthesia. I woke up to the news that my tubes had been tied and I could no longer attempt to have a child.
10 years later, I passed out on my kitchen floor. Fortunately my partner was there at the time. I came to and I was blind. Completely blind. That lasted for about an hour before my sight slowly returned. I was hospitalized for over a week with not much going on, not allowed to leave my bed. I could not even go to the restroom. The doctors and nurses had no idea what I was trying to tell them. This was a very small hospital in a very small Cape Cod town.
Fast forward, I left. I found a new rheumatologist. When I lived in California, I had the best. I would roll into LA every 3 months for testing, etc. Now I get whatever. So finally, the new rheumy tells me that I have very high titers of APA, but that's OK because I don't really have any symptoms. Hell, did you forget that time I spent the hospital not even knowing my name?
So now I have major sores in both nostrils. My skull has huge lesions, as well as my nostrils. I seem to bleed quite a bit. I wake up in the morning with blood on my pillowcase.
I need to find a decent rheumatologist. I am not getting any younger. I am just into the senior citizen stage and I am afraid this disease is ramping up.
BTW, My joints , oh my joints. I have a fake shoulder, reverse on the left arm. So painful. None of my back surgeries even came close. Complete metal ladder in my c-spine and metal in the l-spine since 38 years old. I was supposed to have the right shoulder replaced this past September. They informed me that I would go home the same day. I live in a state that does not allow any medication above 10mg oxycodone to be taken home for a patient's use. I told them to go pound sand. Last time around I needed morphine injections. After my back surgery I ditched the pain meds after 2 weeks.
Sorry if I went off the rails. I feel at this point,I've got nobody in my corner medically. My hubs is completely supportive, but he's a carpenter not a body fixer. Though maybe he could. Sorry.
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1 Reaction@huffman you say that you need to find a decent rheumatologist. I have the names of 3 organizations that can probably help you.
NORD National Organization for Rare Diseases: https://rarediseases.org/
GARD. Genetic and Rare Disease Organization: https://rarediseases.info.nih.gov/
Autoimmune Association. https://autoimmune.org/autoimmune-awareness-month/
These 3 non-governmental groups have all kinds of information and resources for the autoimmune patient!