Lupus anticoagulant positive but I do... - Hughes Syndrome -...

Hughes Syndrome - APS Support
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Lupus anticoagulant positive but I don’t have aps

Slove12
Slove12

Hi everyone my specialist states lupus anticoagulant came positive but technically I don’t have the ApS what is this mean

21 Replies
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HiddenThis reply has been deleted
Slove12
Slove12
in reply to Hidden

Rheum tested me in October it came positive but also for ApS now Jan he tested he said lupus anticoagulant positive but he stated technically I don’t have ApS that’s why I’m confused and I’m also 29 weeks pregnant too so very worried

HiddenThis reply has been deleted
Slove12
Slove12
in reply to Hidden

It’s my first pregnancy my ob recommendation was to do baby aspirin but how I find a ob that knows this would it be high risk ob?

MaryF
MaryFAdministrator

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

Slove12
Slove12
in reply to MaryF

Rheum tested twice I’m also pregnant too 29 weeks what kind of symptoms should I look for also what specialist is it as where can I find it? Thank you I’m just so lost

MaryF
MaryFAdministrator
in reply to Slove12

Hi, our list of specialists for the UK is over on the right hand side of the forum under 'pinned posts', quite a few there. Regarding symptoms, I enclose this, plus a medical paper: 9dc038fd-05c2-4e07-acb8-857...

the-rheumatologist.org/arti...

MaryF

I was told I had the antibodies, but not the syndrome as I have never had a DVT / stroke / miscarriage etc. Therefore I couldn’t be classed as having APS only antibody positive (anticardiolipin & beta-2 glycoprotein I) x

Did they say why antibodies show up?

In my case it was found because I have lupus (the two are commonly linked) x

HiddenThis reply has been deleted
Hayleyrose28
Hayleyrose28
in reply to Hidden

Hi

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

Can you take clopidogrel instead of aspirin? It’s easier on the stomach but is an antiplatelet like aspirin.

I’ve never taken clopidogrel, as my consultant said that hydroxychloroquine should be sufficient at this time. It’s useful to know that it’s a gentler alternative to aspirin - thanks 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!

Slove12
Slove12
in reply to myarabella

Do you happen to know where I can find a specialist I’m in Orange County and I’m sorry for the miscarriage you had did it happen later on if I may ask? I’m very worried I’m 30 weeks now but I’m lost on what I have since my doctor said technically I don’t have aps but my lupus anticoagulant positive

myarabella
myarabella
in reply to Slove12

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!

Slove12
Slove12
in reply to myarabella

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

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