Sticky Blood-Hughes Syndrome Support
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My afternoon in A&E

So I went to the GP who did a heart trace as I was getting chest pain as well as the stroke like symptoms. They sent me to A&E. Chest x ray fine, bloods ok - though my veins have collapsed due to APS and so I am covered in bruises from many blood test attempts. I had also passed a clot this morning - kidneys?? CT Brain scan shows changes which could be artefacts but I now have to have an MRI to be sure.

What worries me is that the consultant said if I was his patient I would be on aspirin. I said I was on aspirin prior to diagnosis and still had significant episodes losing speech, reading, writing, memory etc. He said he would give clopidogrel if there was evidence of stroke but not warfarin.

I have to see him after the MRI - just hoping I stay on warfarin which has helped enormously. I think today's "blip" was because I was told to take no warfarin on Monday. My INR has gone from 5.4 on Monday to 3.1 today - even taking into account different equipment etc this is still a big change in just two days surely?

If told to stop warfarin I will just see the consultant who put me on it in the first place and I have saved the £200 or so needed to see Professor Hughes if he will see me if I really really need to.

So fed up of the fight required to get treated for APS even with a diagnosis. I have had 20 years of this and I am weary. So fed up of living with this syndrome.


5 Replies

Hi Lynn

If you can afford to see Prof it would be good. He could then write a letter for you to show to GP and to hospital Drs etc. Phone the London Lupus Centre and ask for Kim, she is great and will make the appointment.

Dave xx


Hi Lynn. So sorry you are still having this confusion and fight. I feel for you. The problem with seeing the Prof is having to wait 6 months unless you can get a cancellation and it sounds like you need to see someone soonish. Perhaps one of his team there like David or Muntha would be better?

I do hope things improve soon. xx


Thank you both for replying. Am looking into your suggestions.



Hello, I agree with all advice already given, and I would go and see one of the other professors mentioned, or take a cancellation appointment if there is one, it is better to be seen sooner rather than later, and I myself would see one of the other two if the wait is too long, as your care needs swift fine tuning by somebody with complete knowledge not just half of it. Best of luck. Mary F x


do you have to pay to see Professor Hughes ?


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