Has anybody been diagnosed with Hughes syndrome but never had any symptoms of it?

I have vasculitis and am having lots of investigations to find which type (it's looking like PAN hopefully cutaneous type). Dr doc told me I have tested positive for antiphospholipid antibodies.

He explained that a second positive result is required to confirm diagnosis. I just wondered what the likelihood is of second one being negative?? Or is it possible that I have Hughes syndrome with no symptoms???? Just to add I have no past medical history of miscarriage etc and no family history of this either ( I know many ladies with HS unfortunately suffer from this.)

4 Replies

  • HI,

    They say that livedo reticularis is a sign of Huges (APS). The worst thing that can happen is that you go undiagnosed for several years and get a lot of neurological or heart/lung problems. We have all waited for a diagnose and an APS-doctor (most doctors do not understand this strange and new illness!!).

    Then you can be treated for it. That is very important. If I were you, and if you get your second result positive also, try hard to find an APS-doctor and perhaps read the book"Sticky Blood Explained" by Kay Thackray. It is very good.

    Good luck and hope for a good answer.

    Kerstin in Stockholm

  • Hi kerstin, thank you for your reply. I should have mentioned i do have livedo on legs and arms but also had cutaneous nodules on limbs too. Skin biopsy showed vasculitis so docs are thinking cutaneous PAN. Maybe I have both conditions just have to wait and see.

  • It is possible to have APS and have no symptoms or what you believe are no symptoms because they can be very subtle. Certainly lived would be considered a symptom and many people who have vasculitis can also have HS.

    I would wait until you have the results of the second test because if you have had no clotting incidents and have no worrying symptoms then daily aspirin may be the only medication that would be added to whatever your medications are at the moment.

    As has already said being under a APS specialist would be helpful but at least it looks like whoever is looking after you seems on the ball to have at least tested you.

  • Oh the joy of autoimmune conditions! Thank u for your response x

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