Does my diagnosis of Lupus Anticoagulant mean that I have Antiphospholipid Syndrome, and is Hughes Syndrome another name for this, please?

I am male, 55 years old, and have been diagnosed as 'positive for Lupus Anticoagulant Antibody', following a pulmonary embolism completely at variance with risk factors or lifestyle.

Very little follow-up info from hospital or GP.

I have been trying to carry out my own research (re pending moves to dismiss me from my job because of sickness history) and have ended up confusing myself. All my life I have suffered a seemingly never-ending series of viruses/infections and more serious complaints.

No long replies required from you good folks, but any pointers would be very gratefully received. Thank you.

20 Replies

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  • Yes antiphospholipid syndrome and Hughes Syndrome are one in the same.

    A positive lupus anticoagulant antibody and a major clotting episode do suggest that you may have apls. Usually they do the test at least twice and at least six weeks apart and if you get a positive twice and a clotting event you may get a diagnosis. But some people are seronegative and still have apls but are diagnosed on symptoms, some will have all the ducks lined up in a row and still not get a diagnosis. So it's not an easy process.

    Welcome anyway ...lots of support and information here and a very friendly bunch. Its a great haven when you are getting no support anywhere else.

  • Struggling, what country/ state are you in?

  • tassie - Yes, I've had two positives, twelve weeks apart. So, a diagnosis of Lupus Anticoagulant isn't necessarily the same as Antiphospholipid Syndrome?

    Renae - I'm in the UK. (Perhaps for 'GP' read 'family doctor'?)

    Thanks both.

  • Dear Struggling

    I'm also a man in the UK, 58 and I have Primary APS; negative Lupus Anticoagulant test but constantly positive Anticardolipin Antibody tests.

    If you can afford it I would strongly recommend that you have a private consultation with Professor Hughes at The London Lupus Centre. He will be able to assess the correct treament regime for you and write to your GP accordingly.

    Best wishes and good luck.

    Dave

  • The lupus anticoagulant is one of the tests used to test for APLS. It is actually misnamed as it doesn't test for Lupus. So I would think that you should get an APLS diagnosis from the two positives and the clotting episode but drs are strange beasts and aren't always logical.

  • I had a positive lupus anticoagulant test and then a negative 6 weeks later. The reason could be that I am taking high dose steriods for Temporal Artritis, My left eye has venal clots and this caused by APS,, so Ihave the 2 things. The consultants dealing with my problem accept that I have APS, on history and my eye. They don't like it called Hughes or sticky blood but anitphospholipid syndrome. Like you I have had many incidents over my life, its a relief to have something diagnosed, when I saw the Hughes web site I knew that it was my life I didn't need a blood test. The Dr's have accepted this.

    The consultant who seem to be more knowledgeable about APS is my Opthmologist, He did not believe I had Temporal Arthritis and its was all APS but he had the biopsy retested at another laboratory, and it confirmed that I do have Temporal Artritis or has he prefers to call it Giant Cell Aritritis or GCA . He is going to put a steriod implant (Osurdex) into my eye in the hope I get some of my sight back.

  • Hello there and welcome. Sorry to hear about your journey on the road to diagnosis, a very familiar tale on here. I am nearly 47 and have had a life time of appalling health and only passed a Lupus test some weeks back, although correctly labelled seronegative Hughes Syndrome (APS), due to clotting episodes. You will find that being on here, will answer most of the questions you have about it. There is plenty of medical paperwork attached to the Hughes Syndrome Foundation website, and plenty of very valid questions can be answered clearly on here by both the admin team and also members. i have given GP's and other doctors very good articles to read regarding things discussed on this site! They have been found to be useful, as has been writing up my medical history in bullet points to date.. in order to be clear at any appointments, old or new that I have for myself or my children.

    It is helpful to have a good rheumatologist and haemotologist and also to have a GP who is regularly informed by your team. Where are you geographically located as I am sure somebody will know how to help you for clearer advice in y your own area.

    Once again welcome and do ask us any other questions, you feel relevant.

    Mary F

  • Many, many thanks to you all. Taking my time to digest all this and will post replies shortly.

  • Dear "struggling"- I don't know enough about US law but here in the UK my conditions Anti-phospholipid syndrome and Pulmonary hypertension ensure that I am covered by the disability discrimination act and so my employer has to make "reasonable allowances" for my illness. I wonder if there is something similar in the US?

  • Hi I am off work due to another blood clot on the lung I have had a filter fitted now my employer is looking into ill health retirement because I have been off work for 5 months now I also have a back problems due to an accident some yes ago I did not know that antiphospholipiid was classed as being disabled can you let me know how I get hold of the information,

    Thank you.

  • Hi All. First, thank you.

    I am in the UK, and my union rep is requesting that my employer recognises my condition under the Act. My problem right now is that of getting someone in medical authority to back me to the extent of 'He is LAA positive, and this can link to a range of other seemingly-unrelated conditions, etc'. My GP and my consultant haematologist are (like all medical practitioners) under time pressures themselves, and the attitude just seems to be 'You've been diagnosed, we've got you on Warfarin, so keep calm and carry on. Next please.' They are good people. I'm not looking for huge amounts of sympathy from anyone, just a fuller, recorded prognosis. I realise that I am far better off (physically) than so very many other people. Perhaps my biggest problem is that the fight left me years ago, after decades of repeated illness (but nothing life-threatening). I'm really not a whinger, but I fear that this post will make me appear like that, so I'm signing off now. Cheers to you all.

  • Hi Struggling, not it really does not appear that you are whinging, and even if your were, some days we have the right to.

    I think to tackle one thing at a time may help, either your doctors and them taking time, could you book a double appointment with your GP perhaps, so he has more time with you. Then tackle work with your Union support.

    Good luck and wishing you well

    Lesley

    :)

  • Hi struggling

    welcome and glad you found us.

    You don't come across as whinging hon, just fed up with feeling ill and not really having docs who help. More likely they don't really know.

    my diagnosis is lupus anticoagulant positive Aps. My anti cardiolipins/antiphospholipids tested negative but as I've said I have Aps with lupus symptoms overlap and fibro etc etc. History of clotting and at least 2 x positive lupus anticoagulant tests plus other symptoms and miscarriages and st Thomas's gave definate diagnosis.

    In short lupus anticoagulant syndrome is another name for Aps/Hughes.

    I hope we can help.

    Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • Struggling. An alternative to seeing Prof Hughes might be to ask for a referral to St Thoms Hosp London on the NHS see guysandstthomas.nhs.uk/our-... I believe that you may well have a right for such a referral, maybe your GP or local PALS can help. There is quite a waiting list for both Prof H and St Thoms though.

    I had the same situation as you describe in your first para, and the same diagnosis, but in my late twenties in the seventies. In those days our condition was very much a misnamed enigma-before Prof Hughes had his ideas published.

    By the way, fatigue is a common condition with Hughes though getting the right target INR can be of a great help in reducing it.

    Best of luck with it and don't be afraid to ask here.

  • Whatever you do "struggling" do not apologise for "whingeing" because sometimes we just need to vent and everyone on this site will have had similar problems and so understands. I also had the backing of my union so I wish you well x x

  • Currently, there is a bewildering array of names for Hughes syndrome including the antiphospholipid syndrome (APS, APLA or APLS); primary antiphospholipid syndrome (PAPS), the antiphospholipid antibody syndrome (AAS); the lupus anticoagulant syndrome (LAS); the antiphospholipid lupus anticoagulant syndrome (APLAS); the anticardiolipin antibody syndrome (ACAS) and ‘sticky blood’. Our charity calls it Hughes syndrome to acknowledge the doctor who was leading the London team who first described it in 1983.

    You are not the first person to be diagnosed with the very confusing double misnomer of Lupus Anticoagulant and to think you have lupus. We can't get them to change the name in the labs so it's stuck. As everyone says, you have antiphospholipid antibodies (aPL) with symptoms which gives you the APS/Hughes diagnosis.

  • Thanks, everyone.

    KateH - It took over 5 months for my LAA positive result, and I realised quite quickly that the term 'lupus anticoagulant' was a serious misnomer, and spent a lot of time informing people that 1) it isn't lupus, and 2) it can act as a COagulant - hence my PE (but no DVT).

    Further research confused me re LAA, APS, and HS, and hence my question, and the great response by so many members here.

    At the moment I'm just about to return to work after 10 months off. Two days after my LAA positive result, my right knee 'popped' while walking and left me in agony. Four months later an arthroscopy cleaned out some cartilage and arthritic bone, and I'm just back on my feet after 6 weeks recovery.

    Now my employers may consider disciplinary action for breach of contract - two long periods of unrelated illness. Compared with the histories of people on this site, I'd still consider myself lucky!

    Cheers.

  • I do hope that your employers show some common sense. If not may I suggest you think about a word with the Citizens Advice Bureau. I worked for one for 12 years and, though I am now well out of touch, I am sure they will feel that such a misplaced approach can be challenged in employment law.

  • Hi Struggling welcome to the group we always here to help and another bloke here there is a blog with symptoms have a look at that

    paddy

  • I don't think this diagnosis is the same as Lupus E - Lupus proper - it is part if the diagnosis for APS or Hughes Syndrome. Your employer should not be able to count sickness connected to a medical condition as a reason to dismiss you but it sounds as if you need some guidance on your diagnosis from your doctor and possibly support from a union.

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