i have lupus and i was wondering could this story be that i could have hughes syndrome? i need help to answer this

well i dont know where to start this is very long story anyways i just need to know if this could be hughes syndrome and finding it hard to understand why my specialist hav took so long to realise it. how it started off i have lupus n when i was trying for bby i had many of miscarriages n after the third one i wanted to know why i kept having miscarriages n had many of tests this time last year n lupus specialist did normal tests wiv blood tests coz after i had lose a bby i was flaring up alot but all tests came back negative but when i say doctors in woman health she did lots of blood tests too n she did them twice n she came back n told me this time last year tht the blood test came back positive for lupus causing the miscarriages n she told me wat was happening tht i was having clots tht caused me to lose the bby tht i will need fragmin injections n asprin but she never sed wat it was called could this be hughes syndrome? or it just lupus n never understood wat she sed but she sed sumthing about its called sticky blood but again is this hughes syndrome or just lupus? anyway after tht i got pregnant n they put me on injections n asprin but tht dr has never mention it to my lupus specialist n forgot about it til later in pregnancy i flare up lots n my bby is now 5 months nearly i hav bin reli bad flare up n i hav neulogical problems tht i cant walk n keep blacking out n hav stomach problems n bad joints n at end of pregnancy my rods in my back hav moved n caused me lots of pain rods r there coz i had scoliosis n i am anaemic n i hav b12 deficietly n my periods r messed up n i hav lots of bad headaches tht set me off into flare up i am on steriods n chlordroxychquine n morphine n vit d n iron tablets n my lupus specialist is sending me over to another specialist but lupus specialist didnt know anything about then other test tht lady doctor did last year has i hav spoken to him n tried to explain but he send she never sent information to him about them test n blood test i had done wiv him always come back negative but he sed it does more than likely look like u hav hughe syndrome and he has sent me for more blood tests but could i still have hughes syndrome? and what would people do about them tests in past do you think i should try to get more answers about them tests in past ?

3 Replies

oldestnewest
  • Hello there and welcome to this Forum. You have sent us lots of information so I will try and unpick it.

    First of all there are three tests for Hughes Syndrome and one of them has a very confusing name which makes people think that they are also being tested for Lupus. The test is called Lupus Anticoagulant (LA) but it is an antibody test to see if you have the antibodies for Hughes. It does not mean that you have Lupus if you test positive for the antibodies. The other two tests that they do for Hughes are Anticardiolipin Antibodies (aCL) and Anti beta2 gylcoprotein 1 (anti-B2GP1).

    Hughes Syndrome is also known by different names - Antiphospholipid Syndrome. APS, Sticky Blood to name but a few. If they test you for Lupus they will do another antibody test.

    I suspect that after you had your miscarriages they tested you for Hughes Syndrome because after 3 miscarriages they test for it. One of those tests will be the LA test as mentioned above and if you were positive which it sounds like you were, this could indicate you have Hughes. After one positive result they like to repeat the test after 12 weeks to see if you have another positive test which is why they are repeating the test so they can give you a firm diagnosis.

    If you do have Hughes Syndrome then yes when you get pregnant again you would have to take Aspirin and Heparin injections through the pregnancy. Given you have already had one pregnancy which was treated as Hughes then it is important that they know this incase you get pregnant again. You must tell your Doctor this.

    Some people can have both Hughes and Lupus and I am unclear from what you say if in fact you do have both or if the flare ups you are experiencing are just from your Hughes. If they are just from Hughes then it is important that you do get this recognised as soon as possible and get on the correct medication as it sounds like you have a number of issues going on.

    Can you let us know where you are located so that we can suggest some good Hospitals and Doctors close to you as its very important to be treated by people who are knowledgable about the condition.

    In the meantime here is a link to the Hughes Syndrome website where you can get lots of information about the condition.

    hughes-syndrome.org/

  • Hi there, I am saying hello and really agreeing with everything said above, and of course once we know where you are we can help you find more detailed care. It sounds as if you are nearly there with the diagnosis, it just needs some fine tuning, and once it is clear things should be a bit easier to understand and manage. Best wishes to you, and hope you find our forum useful. Mary F x

  • well i am under dr chattopadhyay at leigh but they r sending me to manchester now cause its goin on so long but they defo know i hav lupus but they not sure about hughes syndrome so they r checking it know but i hav bin ill for so long n i am under dr hamdalla for neulogical problems they also think its caused my metal rods hav moved tht might b tramping nerves but its flaring my other illnesses up so i am seeing sumone at manchester

You may also like...