Sticky Blood-Hughes Syndrome Support
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Guys visit

Hi all

I had my appointment at Guys, another 18 vials of blood and deemed positive on Igm, betaglycoprotein and For the first time, Lupus Anticoagulant (Taipan venom? Was negative a few weeks ago on various other tests including Russell viper venom - fascinating the whole testing thing)

Am due back at Guys in a few weeks

In the meantime am still on warfarin inr3-4

Unfortunately it's not well controlled

On Monday I felt really ill - losing and dropping things. Managed to get to my haemo appt, they checked my inr which was 2. So upped my warfarin and took clexane. I have to get my GP to check my results on coaguchek against a proper blood test.

3 Replies

Thanks for progress report, we all learn off each other so useful. MaryF


What's not sorted yet is all my stumbling and tripping. Guys said might be b12 issue, but kings haemo viewed all the blood results and said it looked normal. She said if no answers from guys, I should go back to neurology later.



When your INR is too low you get all the symptoms back. Probably that is why you dropped things etc etc.

See to it that you now have a Doctor who knows APS very well. Rheumatologs do best.

I am on an INR of 3.8 where I feel best.

Best wishes from Kerstin in Stockholm


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