Sticky Blood-Hughes Syndrome Support
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Prof Hughes' July 2011 blog

The first of July saw the final day of our annual ‘Ten Topics’ meeting – the 25th (and in my view, the very best) Ten Topics ever. Our speakers in the ‘masterclass’ series included Professors Cathy Nelson-Piercy and Lucilla Poston (pregnancy in lupus and Hughes Syndrome), Professor Fred Houssiau from Brussels (treatment of kidney disease) and Professor Yehuda Shoenfeld (Israel) who gave an overview of causes of disease entitled “The Mosaic of Autoimmunity”.

Dr Khamashta presented interesting data on our patients with clinical Hughes Syndrome in whom standard antiphospholipid tests are negative. During his three month sabbatical in America, he studied serum samples from a group of ‘sero-negative’ APS patients, using a batch of newer, sensitive tests. Guess what? Many showed positive tests in these refined analyses although such sophisticated testing is not yet available routinely, it does reinforce the feeling that our current tests still leave something to be desired.

While on the subject of newer tests, an interesting collaborative study from Hungary, Israel and Norway was published in the journal LUPUS. In it they found that antibodies against oxidised LDL (low density lipoproteins) were associated with the tendency to acute coronary disease. The relevance of this finding is that some patients with lupus and some with Hughes Syndrome develop angina. Oxidised LDL has long been implicated in causing atheroma and altering their structure by antibodies is a potentially important step in the process. I’m sure this family of antibodies will one day be incorporated in standard cardiology/health screening.

Thank you to the Wolffe family who are doing so much to support our fundraising efforts. On Thursday 21st July, they held a fundraising event at 11 Downing Street, residence of the Chancellor George Osborne. The event was organised by Anna Petrook, Louise’s sister, who works in the office at number 11. It was a splendid do, including speeches by Anna and by George Osborne – very generous considering that the chancellor was in the thick of the European financial meltdown!

Thank you also to those of you who have written such supporting letters regarding the break up of the Louise Coote Lupus Unit at St Thomas’. Although I am long retired from St Thomas’, the whole affair saddens me a lot. In the year when six European centres are setting up lupus clinics based on the St Thomas’ model, it is particularly poignant.

Case of the Month

Mrs P J, aged 37, had a past history of severe migraines and three miscarriages. Her mother had suffered from migraine and stroke (and had also had a full term pregnancy loss).

An interesting feature of her history was that following aeroplane flights, she invariably suffered migraine attacks, sometimes lasting for days.

Finally, after suffering two TIAs (transient ischemic attacks), she was started on warfarin.

She is now very well. No headaches. ‘Fit as a fiddle’. She monitors her own INR in collaboration with her local clinic.

What is this patient teaching us?

I suppose this patient’s history rings many bells – certainly it is a story I hear every day in my clinic at London Bridge Hospital.

Three messages: firstly, always get a detailed family history. Secondly, warfarin, despite its ‘bad press’ is a useful drug – and in many Hughes Syndrome patients, life changing.

The third message is a particular interest of mine – the history of altitude problems in some of our patients – something on which I am going to arrange a survey in our Hughes Syndrome Foundation members.

5 Replies

I realize this is an old post. Does anyone remember what Dr Hughes questions were, that he thought, were important to ask pre-flight?

He stated it in a blog somewhere I thought? Tyia, Cindy


Looks like it was covered in his books


I can’t post the screen grabs but it’s in here case no 42


I have this book, I knew I read it somewhere. Thanks Fusch


Actually case 41 is about the Andes and case 42 about ‘fear of flying’


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