Sticky Blood-Hughes Syndrome Support
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Follow up at guys today

All went ok

I have hydroxyquinine for fatigue and sore joints

Prescription for heparin and she will write a letter for my new gp (I switched) about what to do if inr <3

If I am very unwell it's correct to call an ambulance

I am being referred to a neurologist at guys

Being transferred to their clinic at St Thomas's

Apparently I am 'special' because not only am I triple positive for antibodies but the levels are off the scale!

They want some of my blood for research purposes, it's so unusual

They will discuss a 'bridging plan' for anticoagulation around my shoulder op

4 Replies

Hydroxychloroquine, even!



A lot going on for you but you seem to be being well looked after.

Keep us updated.



Hi, I am also triple positive for antibodies and mine too are beyond what they count! I cannot take hydroxychloroquine as I am allergic to. I don't tolerate Warfarin and I definitely don't tolerate rivaraxoban so I inject Fragmin daily. There is talk if trying me on Mepacrine at my next appointment so I am hoping that may help! This is a complex disease!


Glad you got help. And, of course you're special!


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