Is being diagnosed with lupus anticoagulant the same as ALS/Hughes?

I was recently diagnosed with lupus anticoagulant (my doc's wording), after three positive tests and a blood clot (which started the whole thing). I've had a very difficult time finding info when I search for lupus anticoagulant as a condition. I am feeling confused. Is lupus anticoagulant a component of ALS, or are the two terms one in the same?

8 Replies

  • Im guessing you are in the USA. Some Doctors there seem to refer to APS as Lupus anticoagulant but that is the name of the test that you have tested positive to. When they test your blood they are looking for antibodies and they do three tests (usually), one is LA (Lupus anticoagulant), two is aCL (anti-cardiolipin) and the third is anti B2GP1(anti - beta2 Glycoprotein 1). The disease is called a number of things APS, Hughes Syndrome after Prof Hughes, APLS and others. If you go to the top right of this page and click on the red Hughes Syndrome Foundation Logo it will bring up a link. click on that which will take you straight to our website and you will get lots of info there on the condition.

    Welcome to this Forum and I hope we can be of some help to you. x

  • I had my first dvt 3 years ago and was told that I had aCL and LA antibodies. Despite testing positive on 2 occasions I was never diagnosed with APS. I wasn't told anything about the condition and discharged from the warfarin clinic after 6 months having been told to take an aspirin a day. I had a second dvt this year and ended up in a foreign hospital where the cardio-vascular specialist I was under couldn't believe that I was never told I had APS. He said that one dvt/stroke etc and 2 positive tests 3 months apart means you have the condition. I have seen a haematologist this week who has confirmed the diagnosis. Essentially one major incident and 2 positive tests means you have the condition.

  • Doctor perceptions vary wildly as I had one confirmed DVT, a later suspected clot in the arm, 2 positive blood tests but because I currently test negative, St T's tell me I don't have APS, never have had APS and my symptoms are due to stress. Can't win! Only the Professor's involvement has seen me placed on a treatment plan.

  • I Recently saw a hematologist at Duke who believes that since my recent blood work is " boring," that I don't have APLS and I should be de-diagnosed and taken off warfarin.

    Literally, over my dead body! Until he can come up with an explanation for the previous positive blood work, coinciding with the TIAs/ mini stroke and migraines which all stopped the week I went on warfarin, then I want to stay on the blood thinners! Forever! ( barring a cure.)

  • Please contact a medical center that understands APS..and if there is on going research on APS you can communicate with someone who will be helpful.....I have been in contact with HSS...perhaps they can recommend an MD nearer to you

  • I'm live in the States in the DC area. In 2005 I was nicked in the carotid artery during open heart surgery and had strange "oozing" bleeding. Hematology was brought in for a work up. I was told I had the lupus anticoagulant with anticardiolipin antibodies. I consulted with two hematologists, both heads of their departments. They were initially reticent to diagnose me with APS. They said I didn't meet specific criteria. I never had a clot. Perhaps that was because they caught it and put me on Coumadin before I had one. Years later they now refer to APS during my exams.

  • So many people are confused by this - there are three blood tests which look for antiphospholipid antibodies - two positive results of ANY of them along with symptoms will result in a diagnosis of antiphospholipid syndrome.

    Please have a look at our website for more info:

  • Thanks for the replies, everyone. This helps clear things up for me. I feel as though my doctor is reliable, he is the section head of vascular medicine, a coagulation specialist (medical director of the coagulation clinic). Though I have to travel to see him, he saved my fingers after a month of at least a half dozen docs in my area misdiagnosing me with Renaud's, even after the tissue had begun necrotizing. I think I'll call his office today for clarification, just be be sure about things.

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