I have tested + for anticardiolipin antibodies - is this related to Hughes Syndrome?

I am apparently positive for these antibodies. I had to attend the recurrent miscarriage clinic about 7 years ago before finally managing to have my second child and was told there that I had 'sticky blood' and lupus. Last month I was told that I now have Sjogrens Syndrome and am currently taking Salagen to help with voice loss and swallowing problems - I'm also on mefenamic acid for endometriosis. I was just wondering what the implications are generally regarding these anticardiolipin antibodies - I had to take 150mg aspirin daily through pregnancy but have been told that I don't need to do anything about it unless I have a blood clot. I'm just a bit confused by it all really . . . each doctor I see seems to have a different story for me!

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  • APS and Sjogrens are linked so its very common to have both of these conditions. If you were told you have Sticky blood then that is another name for APS and Hughes which was the name given to APS after Prof Hughes who discovered the condition.

    Nor everyone who has APS has Lupus and many people get confused about this because of the tests that are given to people to test for APS which are called Lupus Anticoagulant. if you do have Lupus too then you should be being followed up for both of these two conditions.

    Some Doctors believe that if you are not suffering symptoms then you dont need to be taking Aspirin for APS and others think that you should take a baby Aspirin. It is confusing I know.

    Where are you located because we can suggest somewhere for you to be referred to in order to get the best care and advise.

  • Hi there, you need or rather your various medical practitioners need some more detailed guidance, let us know where you are. Do you have a GP happy to refer and help! That is half the battle, the other half is having a diagnosis which you do have. I am sure we can help thing get more finely tuned. I have three of your things as well, and another two also, it took a while to get things sorted. I am now under St Thomas' and London Bridge which keeps local things flowing better. Best wishes. Mary F x

  • There are three blood tests for APS/Hughes syndrome: anticardiolipin antibodies (IgG and IgM), lupus anticoagulant, and beta 2 glycoprotein antibodies (IgG and IgM). There are also some secondary antibodies that are tested for less commonly, eg phosphatidylserine.. Some people have just one, some have all three (some have none, ie "seronegative"). Treatment depends on whether you've had a thrombosis as well as symptoms, since there are also non-thrombotic manifestations (which are often unknown to the many uninformed healthcare providers, since this is, relatively speaking, a newly described medical condition. It was first described by Prof Hughes in 1983, but it is so complex that the knowledge about it has not spread as quickly as AIDS, the other medical condition described at a similar time but is much more straightforward.

  • I noticed from your profile that you were diagnosed with Stills Disease, thought to be a autoimmune condition and a form of systemic Arthritis. RA and other autoimmune conditions are linked with APS and have over lapping symptoms. I have attached a link here from the Stills Assoc website on what they say about associated conditions and in particular APS. They seem to be saying that it is common to test negative for Lupus so I think that this is just one element of the information you have been told about your results that needs to be clarified and I'm not surprised you are confused.

    It is inconceivable to me that somebody with your serious condition and who has had such previous episodes would be refused referral. That is simply not good enough and you need to return to your GP - see another one if necessary or write to the Practise manager or PCT in order to insist that the decision is over turned.

    In terms of who you ask to be referred to that depends on if you want your Stills to be reviewed and hope that they have knowledge on APS or if your concerns are now more related with that condition in which case I would personally ask to go to the horses mouth which is St Thomas Hospital in London. If you can drum up the funds and want to see a Rheumatologist that will give you second to none advice on APS and Sjogrens and hopefully your other conditions too then I would see Proff Hughes at London Bridge, if he cannot answer all your questions on Stills he will certainly be able to point you in the direction of somebody who will and then you will at least have your mind set at ease.

    Here is the link I spoke of and please keep in touch x

    stillsdisease.org/index.php...

  • Many thanks for that link Lynn - I've not seen that website before and it's very interesting.

  • Thank you all so much for answering my question with such a wealth of information!

    I think I am confused because every rheumatologist or doctor that I have seen appears to have a different diagnosis for the various different ways that this disease has affected me. I was diagnosed with Stills when I was 16 some 30 years ago - this was when I was most seriously ill with very inflamed joints, rash, fever and ultimately kidney and liver failure. However, I recovered with no long-lasting joint damage. The rheumatologist that I have just seen (Dr Elizabeth Price at the GWH in Swindon who specialises in Sjogrens) did mention the fact that I have quite a receding chin which is seen in post-pubescent Stills children - however, in her summary letter after the consultation she wrote that she thinks I have Primary Sjogrens and not Stills or Lupus.

    Apart from miscarriages, my health was generally fine through my 20s and 30s but has deteriorated since I hit my 40s - I don't especially suffer with joint pains although get bouts of aching joints without any swelling. I did have a bout of pericarditis about 18 months ago and my ECG showed that my heart was performing like that of 'an 80-year-old man with angina' to quote the cardiologist! I haven't had any thrombotic events to date although the pericarditis was initially thought to possible be a PE until I had a CT scan to rule that out. I just feel that I need to know as much as possible as I have found already to my cost that you need to question doctors constantly if you feel a diagnosis is wrong (I had appendicitis misdiagnosed for 18 months.)

    I have already changed GPs once since moving to the Swindon area and on the whole they don't seem to be too bad although clearly they don't like to refer unless you nag them! My problem was that I saw a GP registrar who clearly did not like the fact that I brought a list of my symptoms and known test results and suggested to her that I wondered if it was Sjogrens ( I had found out that one of the rheumatologists specialised in this and so wanted a referral) - she told me that I just had to expect to have pain 'with my condition' and that I just had to learn to live with it! I do wonder if I have a large 'H' for hypochondriac which comes up on their computers when I go to the doctors.

    I haven't worked since before having my son 13 years ago and so I'm not in a situation where I can afford private health - the NHS always used to be very good but in recent years there doesn't seem to be any joined up thinking. I would like to get on top of things though as I'm currently studying psychology and behavioural neurology and would eventually like to be able to get back to some kind of career. (I was forced to study arts subjects first time around as I was not physically able enough to manage in the labs to do A level science back in the 80s!)

    Thanks for any further thoughts you might have.

  • Plaquenil is often prescribed for both Sjogrens and APS and indeed a number of other connective tissue diseases now. I would certainly think you could expect to try this at least.

    If I was in your position I would certainly want a referral with regard to the APS not least because of the pericarditis and positive anticardiolipin antibodies. Therefore I would go for St Thomas if possible and ask for Prof D'Cruz or Khamashta who would have the best chance of knowledge of your condition and APS.

    Please dont let yourself be bullied by these people. Our condition needs peace of mind as part of the management so worrying yourself about any aspect is not going to help you at all.

    Please keep us informed as to your progress and if we can help in any shape or form come right back. Good Luck. :-)

  • Yes I certainly second all of this. Mary F x

  • Hi. I know you posted this a long time ago but I have only just joined this site. I hope you are now keeping well. I go to see Elizabeth Price in Swindon (on a private basis) approx every 6 months. It is a 10 hour round trip for me but so worth it. I have Sjogrens, RA, Psioratic Arthritis & Fibromyalgia. Dr Price is the only consultant who has properly listened to & helped me. I cannot thank her enough. I'm on methotrexate & hydroxychloroquine. Best wishes to you.

  • Hi AnnB51,

    I wonder if you also have APS (Hughes Syndrome)? Those illnesses you have been diagnosed for can also be close related to APS and are often mixed up or misdiagnosed so it is very important that you now have a Doctor who is a Specialist of autoimmun illnesses (often a Rheumatologist) and particularly in APS (Antiphospholipidsyndrome). Hope you feel well.

    Best wishes to you from Kerstin in Stockholm.

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