I Was diagnosed with Lupus Anticoagulant

I was diagnosed with lupus anticoagulant(LA) over 6 years ago. I suffered from blood clots all over, and suffer every day because of it. Now I know some people say Hugh's Syndrome, APS, and LA are all the same. I have also heard than APS and LA are different. Something about LA being Thrombocytopenia and APS being Hemmog(forgot the word). My dr calls it LA. So which is it? Anyone know for sure, without a doubt? Would just be nice to know the name of my illness that I'll have the rest of my life. I know not a ton of research goes into this disease, but I want to get out there and spread awareness. Thanks for any answers in advance!

13 Replies

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  • Hi! Lets clear this up for you shall we? APS stands for Antiphospholipid Syndrome, it can also be called by a number of other names, usually Hughes Syndrome but used to be called (depending on where you live in the world sometimes) Lupus Anticoagulant, Sticky Blood and some other names!!!

    The antibodies (aPL) that are tested for to see if you have the disease are called Lupus Anticoagulant (LA), Anti-cardiolipin (aCL) and anti-B2GP1. Lupus Anticoagulant has nothing to do with Lupus by the way which can be quite confusing!!

    Thrombocytopenia is something that people with APS can get which can show itself as a type of rash called petechia.

    Where are you located if you don't mind me asking as it will help us support you better and if in the UK are you under a APS specialist?

  • Yea I know alot about it, we'll as much as you can rummage up online (which isn't a whole lot). I live in california US. I know my hospital calls it LA. Just wanted to make 100% sure, so I don't give false info out. I have had this for a little over 6 years, Myou test numbers are usually really highave, last test I was at 134. Dr says normal is in the 30s. I've suffered just about everything, except they haven't be able to see that I had a stroke or not.

  • Sorry to hear that. I hope your Dr is an APS Specialist as we know from experience that being treated by someone who specializes in the condition helps a lot with the outcome in peoples care pathways.

  • He is an oncologist, he is the only dr that has any experience with it. I can't just go to any dr, as I am 100% disabled vet and only get seen at the VA hospital. I go to my coumadin clinic and he checks my labs every few months. Not much else they can do, right.

  • As long as you anticoagulation is at the correct level, symptoms are being kept under control by that anticoagulation and any other autoimmune conditions that pop up to travel along with the APS (as unfortunately they do seem to do that) are also treated appropriately, then you will be fine. An APS specialist is usually able to put all these things together rather than you being pushed from pillar to post with Dr's fighting their own corner and you being given conflicting information and often advise about how to treat those different conditions.

    Just so you know, Plaquenil is a medication that is often given as a matter of course here in the UK for APS so perhaps mention that to your Dr too.

    Good Luck.

  • It isn't a drug that the VA (veterans hospital) is authorized to use at this time here in the US.

  • It should be I live in Missouri and that was the first thing I was put on!!

  • Agree 100%. My diagnosis was Lupus Anticoagulant and I was warned at the time that it was an inappropriate label. But that was in the mid 70's! Thankfully Prof Hughes has since pulled it all together and we now know better and why we should use Antiphosspholipid Syndrome (or Hughes Syndrome)

    I think, KalyKrill, that your doctor has some catching up to do - as have many others.

  • Hi and welcome, I notice you have already had a very good reply from my colleague. MaryF

  • Hi,

    I have all the three antibodies positive and also high testnumbers of LA since 2002.

    I have been on Warfarin (Coumadin) since 2011 and when you are on Warfarin they can not take the LA-tests anymore as it is not reliable at all.

    So I guess you took the last LA-test before you were put on Warfarin (Coumadin). We also need a higher INR-number than ordinary people on Warfarin. My therapeutic level is 3.2 - 3.8 and I selftest here in Stockholm since 4 years.

    "Sticky Blood Explained" is a good book by Kay Thackray about living with this illness. You could also look at the charity website hughes-syndrome.org/selfhel...

    It is important to know as much of our illness, as there are very few doctors who know what it is and how important it is that we are properly anticoagulated as we have too thick blood. We very seldom bleed from it but clot.

    Best wishes from Kerstin in Stockholm

  • That's was news to me, as well as it is going to be for my dr. I have been getting regular anticoagulant tests for 6 years and I have been on wayfaring for just as long. Learn something new everyday.

  • The link says it was not found.

  • Skip "selfhelp" perhaps. It works for me here in Stockholm even with the www. in front of it.

    I have been several years on this site and it has worked.

    Kerstin

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