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Thanks Veej.
Yes Lupus is a chameleon. My niece also has it but it presents very differently. She has a soaring ANA (over 2,000) but has not tested positive to any of the usual antibodies - clearly they haven't discovered the test for the one she has. She has pericarditis, significant mouth ulcers, raynauds (one thing we share); and last week had Bells palsy, she has also had seizures. She doesnt get malar rash. I wonder also if she will test positive for APS - her immunologist was told about my results and has now accelerated her testing. She has been on plaquenil for a few years now.

She doesnt have livedo reticularis, dry eye and mouth issues, and nor has she had a DVT - BUT it wouldnt surprise me if she turns out to be one of the rare presentations where AP causes prolonged bleeding as she has been tested for Von Willebrands and has a history of prolonged nose bleeds.

I have only just started on the plaquenil, so it isnt really kicking in yet. I have always avoided the sun due to the rash I get - now I know why. My eyes drive me crazy but had a helpful pharmacy assistant who said that possibly if my immune system was in overdrive then I may have developed a sensitive to the preservatives in the drops I use; I wasn't convinced at the time but purchased the 'anti allergy' drops yesterday. Oh my gosh, she was right. For the first time in years my eyes have stopped being itchy. So something to think about - the optician kept telling me to use the drops (with preservative) but they were the things causing the reaction! I now have drops with no preservative in them.

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