Sticky Blood-Hughes Syndrome Support
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Australia- Brisbane specialist?

Hi ive just moved to Australia (brisbane) and was originally under Prof Khamashta at London uk. I found Prof K to be fantastic but he went on sabbatical and i was put under Dr Sangle who i found ok but did not listen to me.

I was originally seronegative for APS then eventually showed positive, with borderline anti beta (??) and in the last 18 months or so I started to show very high AntiDSdna results but still negative ANA. Dr Sangle said although he clinically cannot stare i have lupus he thinks i have it mildly and so put me on low dose hydroxychloroquine.

What i want to find is a specialist in brisbane who ix interested in these condiyions and is aware that seronegative is an actual thing. I want someone who is thorough and lustens.

We may wish to have another child and I will really need to plan and prepare responsibly if we do especially as I will need a cesarean section.

If anyone has any recommendations id be really grateful.


3 Replies

Hi and welcome! I'm in Sydney so can't help with a Brisbane doctor. I did see the lovely prof K in London couple of years ago and he did do a grand round (unfortunately couldn't get to) at St George hospital in Sydney. However he did give me the name of A Prof Steven Krilis there with whom he was liasing-so if someone doesn't come up with a name in Brisbane here is a link and also an email adress about half way down so possibly send him an email and ask if he knows of any colleagues in Brisbane. Hope this may help.

I didn't actually see this fellow because Prof K sent long and detailed letter to my Rheumy at home and was happy with my treatment. He did suggest Plaquenil and I gave it a 3 month trial with no difference to symptoms so no longer take it.

1 like

Thank you very much Ozchick, thats a great help.

Im sorry that plaquenil didnt help you thats a bit frustrating.


How did you get on? Did you find someone in Brisbane? Am also looking


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