Hi everyone my specialist states lupus anticoagulant came positive but technically I don’t have the ApS what is this mean
Lupus anticoagulant positive but I do... - Hughes Syndrome -...
Hi, I tested negative a few times, but now regularly pass two out of the three tests, same for my children and relatives. Please ask for the tests to be repeated again if only done the one time. Do you have symptoms? If anything further shows up, you do need to have the right specialist who fully understands the condition, we have some on here, on this forum and also on the charity website. MaryF
I’m under Professor David D’Cruz, who, to my knowledge, has expertise in both lupus and APS. He’s the person that told me I don’t actually have the syndrome, despite the antibodies. To be completely honest I wasn’t too clued up on the criteria either way.
In my case, I’m told they would usually prescribe baby aspirin. As I have quite severe gastric problems, that is not advisable. So at the moment I’m only treated with hydroxychloroquine, as he said he’s not keen to ‘over-treat’ me when I’ve not had a clotting episode. X
I tested positive for ANA from @ age 2 until I went gluten free in 2004. I was diagnosed with APS in 2000, after suffering symptoms of such to varying degrees for the previous 14 years. I carried both of my 2 pregnancies to term. It's complicated with, as you no doubt know from reading the previous responses and the pinned post, with no easy "check list" diagnosis applicable to all patients. But it certainly sounds like you are on the right track.
Hi- I tested positive for APS and Lupus anticoagulent; however, when I have retested over the years the APS antibodies are not always present. From what I understand, it does not mean that you don't have APS. I am in the process of seeing a doctor who specializes in APS. If you haven't yet I recommend doing the same. I had no symptoms of APS, except extreme migraines, over the last 13 years. Prior to that it was the pregnancy losses that lead my dr's to check for APS. This year, 13 years later, I had my first DVT (deep vein thrombosis-aka blood clot in a vein), which was discovered when I was having unrelated back and hip pain. I am still trying to figure out my own medical situation, but I wish I had had better diagnosis and care over the years. Perhaps I would not have developed a blood clot. I wish you good health!
Hi there- I had an OB, Perinatologist and Hematologist while pregnant. Which medical group are you with for OB/GYN? I live in Mission Viejo, CA and the only APS specialist I found is in Beverly Hills - Dr. Daniel Wallace/Rheumatologist at Attune Health. Regarding my miscarriages, they happened over 14 years ago. Three in the first trimester and the last one in the second trimester. The last miscarriage was horrible and it is what lead to my diagnosis of APS. The good news for you is that you are already 30 weeks. From what I know, a baby can survive at 30 weeks, but the closer you get to 40 the better Do you have an APS diagnosis? If so, are you on Lovenox and Heparin (typically patients are switched to Heparin in the later part of the last trimester because it is short acting. Also, I used a device called Belly Beats during my pregnancy. It is a doppler that allowed me to hear the baby's heart during the later part of pregnancy when the baby doesn't move as much. You can Google it and rent one. It was about $25 a month and great for peace of mind. If you find an APS specialist in OC please let me know.
All my best with you pregnancy and you little one!
Oh my parents are in mission I’m in Anaheim so close ! I have kaiser but I would you recommend for me to go to that doctor ? Oh gosh I’m sorry to hear that at the last one you had then they give you medicine before that they didn’t know? Will what I’m confused is that my rheumatologist said it came positive for lupus anticoagulant but this is what he said I technically don’t have the ApS because I did not have these in the past but then he says that other test is positive so I can have miscarriage and blood cloth I’m just so lost and scared . Thank you so much for all of your help and I will look into that Doppler