Lupus Anticoagulant Confusion

I'm new here, just hoping for a bit of advise. I was diagnosed with SCLE last year via a biopsy & started on hydroxychloroquine for the summer. After a couple of weeks I had my clotting factors checked & was found to have a positive lupus Anticoagulant all other bloods were normal. I stayed on the hydroxychloroquine until November. I'd had joint & muscle pain for as long as I could remember but was surprised at having such a big improvement in these symptoms while taking the hydroxychloroquine. Nor did I have any migraines, I've been having those since my teenage years. I was referred to a rheumatologist in January after joint & muscle pain crept back. Restarted on hydroxychloroquine with repeat bloods. All normal except 2nd positive lupus Anticoagulant. Referred onto a haematologist. He decided I should have a 3rd lot of bloods processed at a different laboratory. These have come back as negative for lupus Anticoagulant. I am confused as to how this will effect me now. He was sure they would come back positive for a 3rd time. I have no other aps symptoms.

11 Replies

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  • Hi there and welcome, it is possible to go in and out of positive testing, it is great that the migraines settled down, some of us also do well being on a small dose of Aspirin, I take 75 mg twice a day on a full stomach, some take only one, but you need to ask about this when you speak to your consultant, alongside making sure your vitamin D, B12 Iron and Thyroid is tested alongside the other tests. Great that the Plaquenil has calmed things down a bit, it is helpful to many people, I can't tolerate but my daughter does well on it.

    DId they do all three tests for Hughes Syndrome/APS or just the test you mention?

    MaryF

  • Hi my blood tests were positive, negative then positive. I've had mini strokes and a spinal stroke and definitely have APS even though I had a negative test once.

    Hydroxychloroquine has helped my joint pains and I'm even negative for lupus! Dr said I have lupus like syndrome.

    Take care.

  • So are you back on hydroxychloroquine? I don't understand why a 3rd test is necessary and especially at another lab. It is recommended that tests are done at the same lab because of different testing methods. My personal recommendation for you is to find a Hughes Syndrome specialist. We have a list under our Pinned Posts section here to your right on this page. Find one in your area. Be firm about the fact that antibodies are known to go up and down and should not affect the clinical picture under which a Doctor should assess you for a diagnosis. You say you don't have any other HS symptoms but you have declare migraines and aches and pains! Its possible that you have others that you are not associating with the condition.

    Make sure all the aPL tests are done especially anti-B2GP1. Please keep us informed and don't give up until you are satisfied you have the right answer. You will also get copies of studies, Blogs and videos on here that should help both you and your Doctors.

  • Thank you for your reply. Yes I'm back on the hydroxychloroquine 200mg per day. I'm waiting for an appointment to go back & see the haematologist to discuss these 3rd set of bloods that were done via a different lab. As far as I'm aware it's just the lupus Anticoagulant that came back positive. I know my vitamin D is fine but as for what other tests have been done I'm not sure. I know my maternal grandmother died of a stoke, it's only recently I found out she had many TIA's preceding her 2 big stokes. It was a long time ago & I was away at uni at the time, so didn't get to find out all that went on. My other grandmother died of a massive heart attack. I've suffered no miscarriages in my life & have had two amazing kids & no DVTs of any kind. But Nor do I want to wait around to get one so some doctor can tick a box on his sheet. The whole thing terrifies me. They've been digging around to see if I have any systematic elements to the lupus & side swiped me with this. I never used to get stressed at getting a headache or migraine, now I'm left wondering if I've got anything to worry about.

  • Hi and welcome to our friendly "club"of Hughes Syndrome/APS!

    As Mary says antibodies go up and down. When you have had 2 tests of Lupus anticoagulant positive within 12 weeks you should have a diagnose of Hughes Syndrome/APS.

    I agree with APsnotFab as I do not know either why you should test the 3rd time as you are diagnosed already.

    As you also have a familyhistory of Hughes Syndrome you should now look for a Specialist who is specialized in autoimmun illnesses. Sjögrens, APS, Lupus and Thyroidea illnesses are like "cousins" and can go hand in hand. Then if is vital to have a Specialist who can distinguish between the bloodtests and symptoms and finally give the proper drugs.

    We need for Hughes a very high INR (if we have Warfarin) as we have very thick blood and do not bleed often but more often clot. Anticoagulation is the key to APS.

    Good luck with this!

    Best wishes from Kerstin in Stockholm

  • Kerstin-- We can be know as { "THE SLUDGE BLOOD CLUB " !!! }

    Doesn't that have a ring to it ??

  • Hi Jim,

    Absolutely!

    For the moment, as I do not wear my weddingring anymore (I am happily divorced), I wear a gold-necklace around my neck with a warning-sign about using ratpoison!

    You and me could wear a ring of triplepositive over 60!

    Ha Ha!

    I like your humour so much!

    Kerstin

  • It makes me happy That I make you HAPPY !!! BIG SMILE AND HUG !!

    C&J

  • I have my USB port on my Dog tag and also a separate stainless dog tag but i can only list 1/2 of my disorders i I ran out of room !!! LOL

  • The sticky blood brigade. Hughes Syndrome Comrades. The sludge blood brothers!

  • Check it out now, the sludge blood brothers. Right about now, the sludge blood brothers! lol

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