Sticky Blood-Hughes Syndrome Support

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

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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

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

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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

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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.

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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

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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

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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

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

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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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Yes thrombocytopenia *idiopathic meant not caused by anything i think

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That’s correct. Sometimes a viral infection can preceded ITP.

When I was 18 months old they called it idiopathic TP.

Now when that occurs my understanding is the “I” stands for Immune. So in absence of a known pathogenic cause, it’s assumed to be ,” Immune Thrombocytopenia.”

This is how my doctors have explained it to me. How the acronyms and understanding have now evolved.

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