Sticky Blood-Hughes Syndrome Support
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Professor Graham Hughes' October blog

October was a busy month.

The national arthritis charity 'Arthritis Research UK' held a patients' meeting on lupus at the Royal College of Physicians - a very welcome 'first' for this important charity. Two of my colleagues from the London Lupus Centre, Dr Chris Edwards, Professor Munther Khamashta and I gave talks, followed by a very lively question and answer session.

It is quite a while since I was last at the Royal College - a beautiful building in Regents Park which serves as a nerve centre for medical education, both in Britain and abroad.

Talking about abroad, in late October, my colleagues in Beirut, Lebanon, held their third annual 'Ten Topics in Rheumatology' meeting. Beirut is a glorious, naturally beautiful city, with the Mediterranean in front (and a promenade to rival Nice) and the mountains behind. The meeting was packed, with physicians from all over the middle east.

It was humbling to see colleagues from centres in Baghdad, Syria, Iran and other sometimes war-torn areas making the journey to Beirut simply to improve their medical knowledge. In particular, one of my ex-fellows, Dr Ikram, had made the journey down from Aleppo (which competes with Damascus as the oldest continuously inhabited city in the world) to attend. She runs a 'free' clinic in the Souk area of Aleppo - an area which suffered a direct hit from a missile one week previously, in the on-going civil war in Syria.

Nearer to home, I gave a talk at the annual nurses' meeting at London Hospital - my old training ground in Whitechapel. Many, many happy memories.

Finally, I gave a talk on Hughes syndrome and the treatment of recurrent miscarriage at a London meeting of the Aspirin Society. This venerable medical group, under the leadership of Dr Nick Henderson has, over the years, brought together doctors from very diverse backgrounds, all with experience and data on uses of aspirin. At this particular meeting, for example, striking data was presented on the improved outcome figures for bowel cancer with the use of regular aspirin.

Patient of the month

Dr P.L. aged 36, a gynaecologist from Seattle, USA had emailed me a number of times regarding her own clinical problems. These had included migraine, memory problems, fainting and a tendency to attacks of low blood pressure.

She decided to make the trip to London with her young son. One of the reasons was that her tests had suggested an auto-immune disease - possibly lupus - but the results had been inconclusive and her physicians weren't in agreement. She had been tested for antiphospholipid antibodies amongst other tests: the results showed a positive "lupus anticoagulant" and medium level IgM anticardiolipin antibodies. In fact she had been diagnosed back home as having "autonomic neuropathy" - problems with the nerves supplying internal organs such as the gut, the heart and the blood vessels. One of the manifestations of this condition is a tendency to falls in blood pressure, causing dizziness and even fainting.

Was this connected to her positive tests for Hughes syndrome? Her past history had included migraine, but no episodes of thrombosis and no miscarriages.

And, by the way, she had had eight metatarsal (foot) bone fractures while jogging...........

What is this patient teaching us?

Eight 'spontaneous' metatarsal fractures! And a fracture of a shin bone. She had been investigated for bone conditions such as osteoporosis but no obvious cause was found.

Back in 2004, we published a paper reporting a series of nineteen patients with antiphospholipid antibodies who developed spontaneous metatarsal fractures (*).

Since that report, a number of other case reports of metatarsal fractures in Hughes syndrome have been published. We are not sure of the mechanism, but it seems most likely that the fault line in the bone may be secondary to bone ischaemia (poor circulation) in patients who have not been on treatment.

And what about the "autonomic neuropathy"? Recognised in Sjogrens, but as yet not in Hughes syndrome.

I have now seen over a dozen Hughes syndrome patients with features of this condition, anecdotally improving with treatment of "sticky blood". Watch this space.

(*) - Sangle S, D'Cruz DP, Khamashta MA and Hughes GRV. Antiphospholipid antibodies, systemic lupus erythematosus, and non-traumatic metatarsal fractures. Ann Rheum Dis 2004, Oct 63 1241

5 Replies

Thankyou for your interesting and most detailed mail. I was also interested in the comments about the use of aspirin for bowel cancer.

I attended the lupus clinic for several years but was signed off,so I don't kow whether I , am still am positive for lupus or APS, although with APS I can tick most of the items. From what I now read in your article, I feel quite faint regularly and have TIA's about every 2 months. My BP is very high but at times it suddenly drops to very low. Cholsterol level improved but high.I have fractured my right big toe and broken my big left toe (which is now twisted and bent so that my toe goes through the top of my shoes. Only had one miscarriage. Had pneumonia 4 times, twice with heart fallure in the last 10 years and 7 strokes, some in intensive care. I could say more, but enough is enough!

Any comments here as to my condition?



Hemmmmmm. Back in the day, before recurrent TIAs/ mini strokes lead to my diagnosis with APLS I suffered from almost uncontrollable low blood pressure. I fainted, or nearly fainted, a couple of times a month. I lived with this for years.

And then--it all went away after I was started on warfarin. My BP has been within normal range ever since. Once, when my hip pain was very bad, my doctor even measured scarily elevated BP. ( My initial responce must have seemed bizarre to him: " Really? High? Gee. Never thought I'd hear that.")



Hi fairly new to foundation web site. 1987 i was dx the anticardliopin antibodies has tias, sezsures stroke behind my eye cebdrual hemotoma, blood clot in lung, part of colon removed and have an illeosstmy also renal failure due to lupus anticologant; please my eye sight and keyboard on my computer is really bad so sorry for all misspelled words hope you can understand this. any comments please!!!!


You were diagnosed in '87? Are you currently on any treatment?


Very interesting blog especially the case history Prof! Lovely to read of colleagues somehow getting all the way through to Beirut - quite amazing to read of their efforts to attend the conference. Autonomic neuropathy makes complete sense to this Sjogrens patient. Merry Christmas to you and to all my "Hughes" colleagues and a very healthy and happy New Year to all.


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