Sticky Blood-Hughes Syndrome Support


I was diagnosed with APS after having a DVT and multiple PE's. Went to Mayo Clinic in Rochester, they told me my numbers were positive, but not high enough to be positive. So recommended I come off of the Lovenox and cont on baby Asa. I clotted again multiple PE's 5 months later was put on Xarelto, clotted on that twice. I've tested 3 times positive for APS had many clotting episodes and other symptoms and now my Dr.'s have me diagnosed with Hypercoagable State. My Rhuematologist just diagnosed me with Fibromyalgia and possibly the beginning stages of Lupus 3 positive ANA's in addition to other symptoms. I did request today to try Plaquenil to see if that would help. Won't know if I don't try. Just had surgery on my legs for venous insufficiency. Sunday's visit to ER revealed kidney stones which I've never had, painful oh my! Is all this related? I feel like I'm going crazy! Will the Plaquenil help? Thank you!

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The Trio of disease is often Hughes Syndrome/APS, Sjogrens Disease and Thyroid problems, the last two often masquerade as so called 'Fibro' unfortunately the tests for the Thyroid are often unreliable if only the TSH is tested, other tests need to be done which at times doctors seem reluctant to do. The tests suggested are here: this if of course a UK charity but it is clear advice. I have all of the above plus Lupus.

Do make sure alongside getting you on the right anticoaguation that your iron, B12 and vitamin D is also kept at good levels. Plaquenil does help many people make sure thought that it is the actual Plaquenil in the UK, pharmacists are told to look for this if they have trouble ordering it: If your pharmacist has any difficulty obtaining the Hydroxycloroquine with the same formula from Zentiva, the product description is: “HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED” and the ‘PIP number’ (Product Code) is 1201730. If for any reason they cannot find the product on their system they can ring the customer service line on 01483 505515.

I am hoping that perhaps in the USA there is somewhere your pharmacist could ring to track it down for you. Other members in the USA may have more localized advice for you. MaryF

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I did have my thyroid tested which my Endocronologist said was good. My vit D level is at 9 so I'm now taking a vit D supplement.


Great you are on vitamin D, I am glad to hear that you have had all thyroid test done as normally and often only the TSH test is done, you have been very lucky if all of those have been done!!! I know my main professor likes my vitamin D to sit at around 75. Hope you feel better soon. MaryF


I wonder if your Rheumatologist knows APS? They earlier took you off Lovenox and put you on only Baby-Aspirin, is that correct? You also clotted on Xarelto! Have you tested positive for Lupus Anticoagulant? You obviosly need an Anticoagulation that works to avoid further clots and DVTs and PEs.

Best wishes from Kerstin in Stockholm


Are you actually on a anticoagulant now and if so what is it please?


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