Bleeding disorders alongside APS

Hi I know we all have antiphosoloipid syndrome & all the unusual and horrible things that this brings with it. I just wondered if anyone has ever had a platlet problem too ( storage pool disease ) this causes prolonged bleeding so make the clotting caused by APS more difficult to treat. I think it might be a totally separate unrelated thing from APS, but I'm not sure? I wondered if anyone has any thing similar and how it has been managed. Thanks

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  • Hi, my late father would have had Hughes Syndrome/APS and he also had Thromboyctopenia. My daughter has Hughes Syndrome/APS and Lupus, and when she was very small had episodes of Henoch Schonleinpurpura, this is all linked to the bigger picture.

    ncbi.nlm.nih.gov/pubmed/257...

    MaryF

  • Thank you so much for posting this Mary. Very interesting I just never realised there was a connection between the two .. Can I ask if you don't mind if either your father or daughter took warfarin. Thanks

  • My father was on Warfarin, my daughter is on Plaquenil and Aspirin. MaryF

  • Thanks again, you don't know how much this has helped. In 30years no one has ever told me there is a connection so I have felt quite alone & scared at times taking warfarin with a bleeding disorder. I feel quite relieved that it can all part & parcel of APS. Thank you

  • I had severe immune thrombocytopenia at age 18 mos old. I have had APS for many years ( very classically symptomatic but docs never connected the dots) but only formally diagnosed in November 2015.

    Thrombocytopenia is linked with APS.

  • I have reduced activated protein C (LIeden V) which is completely unrelated to APS and also causes clotting. Just lucky, I guess...... glad you are feeling better about it all, it helps to connect with knowledgeable people like Mary.

    Regards, Julie

  • Hi yes i've had thrombocytopaenia for 30 years and then i started with Aps. It's well documented that there is a connection .all the best Elfie

  • Thank you so much for all your kind replies. You learn something new all the time with this illlness. Initially they said there was no connection so I just took it as a separate condition but that was many many years ago. I am going to ask them to clarify exactly what disorder I have. They have always just said storage pool disease but that covers lots of disorders I think? I always have low WBC and low neutrophils so wondering if it's thrombocytopenia That must be tough Julie having two clotting problems. One is quite hard enough to deal with. I think we all amazing they way we learn to live with everything our health throws at us at times. Take care & thanks again

  • I have Factor V Leiden, Factor VIII, Activated Protein C, Hyperhomocysteinemia, and Mixed Hyperlipidemia. I feel like a walking time bomb...

  • Hi Michielson,

    I must admit that I do not know about Factor V Leiden, Factor VIII, Activated Protein C, Hyperhomocysteinemia and finally Mixed Hyperlipidemia.

    With all those diagnoses I hope you have a really good and knowledgeable Doctor and I wonder if you also have been diagnosed with Hughes Syndrome and have the symptoms of our illness?

    I know some members here with Factor V Leiden together with our HS/APS.

    Are you on anticoagulation for your symptoms?

    Best wishes from Kerstin in Stockholm

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