Sticky Blood-Hughes Syndrome Support
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After almost 3 years of searching for answers, last week I was diagnosed with seronegative lupus. The doctor evaluated previous blood tests and also physical features such as arthritis, discrete rash on my face, the hair loss and other features. Even though it makes a turn on my APS (which now is considered secondary), as far as I understood, the APS is minimizing the effects of the lupus. The meds are the same, only the dosage is higher. Anyway, I just thought that since many of you has also been diagnosed with lupus, you could help me to figure out... Did you life change drastically after the diagnoses?

3 Replies

Im sorry no one has come forward to answer this question for you _ Im sure its the time of year!! I personally dont have Lupus but from what I know of it and those that do have it along side APS it will depend very much on your symptoms how you are treated and what drugs you can be offered.


Hi my name is Rose and I to have lupus and I was wondering if you have found out anymore information! I find the most difficult thing is explaining it to friends and loved ones! As they don't see any physical outward signs (I don't look I'll) the fatigue and everything else that goes with lupus is a killer! Have you found the right meds? I've tried everything but I'm still exhausted ! Kindest Regards Rose


On my letter it says hypermobility single positive test lupus anticoagulant with levido reticularis. Been gave a depot steroid injection today and hydroxy chloroquine. I forgot to ask if I should still take the rest of meds so going to ring tommrow. I have aps too. But not sure if I have lupus . So confused and in pain.

Glad u got some answers. X


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