Sticky Blood-Hughes Syndrome Support
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Prof Graham Hughes' May blog

Wet, wet, wet. Another record! Wettest April ever recorded! Grey and cold well into May. Yuck.

Three interesting meetings to report, the third being the annual Hughes Syndrome Foundation Patients’ Day earlier this week.

One meeting was an ‘emergency’ gathering of lupus doctors from a number of European countries, to discuss the new lupus drug ‘Benlysta’. This medicine, the first ever to be ratified for lupus treatment was developed after very extensive worldwide trials and found to meet strict medical requirements. It is now available in most European countries – but not England! NICE have turned it down on (I’m told) cost reasons. One unfortunate knock-on effect of this decision is that British lupus experts will have to rely on other countries such as Germany for experience in its usage.

The second meeting, the eighth international congress on autoimmunity was held in Granada, Spain. Although I was only there for 24 hours, it really was one of the most stimulating meetings ever. The world of autoimmunity covers the whole of medicine, from thyroid disease to Hughes syndrome, from vaccination to cancer treatment. And the scope gets wider and wider with, on this occasion, insights into autism, sleep disturbance, epilepsy, loss of smell, multiple sclerosis and pregnancy loss. Thanks to the leadership and energy of Professor Yehuda Shoenfeld, the presentations are all available online and in print.

The third meeting, the annual Hughes Syndrome Foundation Patients’ Day, held at St Thomas’ hospital was packed. After the short talks, there was a truly lively Q&A session, which covered topics ranging from sero-negative APS to the brain in APS, from life and travel insurance to newer anticoagulants, from genetics to when (if ever) to stop warfarin. Congratulations to Kate Hindle and Lynne Kirwin and their team of volunteers for arranging such as successful afternoon.

Case of the Month

Mrs DL, aged 52, complained of recurring headaches, ‘cold’ circulation, two previous leg clots, and more recently, memory problems and balance difficulties. She had a long history of ‘fibromyalgia’ – aches and pains. She had put on some weight, had ‘pins and needles’ in the fingers of both hands, and finally – the problem which brought her to my clinic – a TIA (mini stroke).

Investigations showed a blotchy skin rash (livedo reticularis) on the arms and legs, slightly tender muscles, and sluggish tendon reflexes – a sign of a possibly underactive thyroid.

Blood tests showed positive anti-nuclear and anti-thyroid antibiotics and moderately positive anticardiolipin antibodies (aCL).

A possible diagnosis of lupus was made – subsequently changed to Sjogrens syndrome (dry eyes, dry mouth, aches and pains), together with underactive thyroid and probable Hughes syndrome.

What is this patient teaching us?

For a lupus doctor, a fairly common set of problems – Sjogrens syndrome (masquerading as ‘fibromyalgia’), hypothyroidism (sluggish metabolism and sluggish reflexes) and Hughes syndrome (features including DVTs, mini stroke, livedo and positive antibodies). Treatment with Plaquenil and baby aspirin. Thyroid replacement.

And yet so often missed. A common medical triad, but each with symptoms which have, it might appear, few obvious diagnostic clues.

The very first lesson in medicine is ‘listen to the patient’ – and in this patient’s case, the bigger picture came with the family history.

“Anything similar in your family history?”

Mother – low thyroid

Aunt – low thyroid

Mother, aunt, three sisters – migraine

One sister, one aunt – multiple sclerosis

One cousin – lupus and epilepsy

Two cousins – DVT

Five female close relatives – recurrent pregnancy loss

At the Patients’ Day this week, the question was once again asked – is this a genetic disease?

Again, the answer seems to be – possibly. But in any genetic study, the right questions need to be asked. Not ‘anyone with thrombosis or pregnancy loss in your family’ – but … MS, migraine, thyroid, epilepsy, balance problems, memory loss, infertility, heart valve disease, low platelets – and even, as the ripples of Hughes syndrome spread – more. Only in this detailed way will we realise the full clinical implications of this syndrome.

8 Replies

Dr. Huges - you must come to Canada to teach the doc's here - they know very little about APS - my wife has CAPS and doctors here are at a stadstill at what to do = she has been in the hospital for over a year - only a few short breaks here and there - we have tryed to get my wife to Better doc's in the US - but the Canadian Gov. will not cover it - she is too unstable to fly to the UK.. or I would take her there... right now she is in Kingston General Hospital - with verry puzzled doc's


I second that, Dr. Hughes. Am in Vancouver, saving up my teacher's salary to come to London Bridge. Tired of explaining and needing treatment.


I am so sorry that you are not able to see Dr. Peter Ford. He was my Doc at KGH some 30 years ago and first diagnosed APS in me. He followed me for many years and through many crisis. I can't believe that things have taken such a step back. About ten years ago I had another crisis and found like you that the doc at the time had very little info or comfort level. I will say that I often present with very odd problems - but what is new about that with APS. I hope you are able to find a really good and interested doc in the area!


Jenni (my wife) had Peter Ford too - untill he had let go of his clients... he is now retired and lives on Manitoulin Island, enjoying his retirement...


I'm very happy for he and Sally. They are very good doctors. I wish that he had left the area in better hands. I have heard good things about Dr. Toeheed, but not in relation to APS.


I asked my doctor if Hughes was genetic as my mother and brother have similar symptoms to me and my doctor wrote to the Haematologist that I am under and he said that the antibodies were acquired and therefore there is no genetic component to the disorder. I am now going to make an appointment with him as I have been told I have 'sticky blood' but have not actually had a proper test (as far as I am aware). although I have been on Warfarin for over 10years due to recurrant DVT's and have alot of the Hughes symptoms. It is very frustrating as I have been suffering since my daughter was born 25 years ago. I am so grateful to this web site and forum as I thought I was going mad with all the unusual symptoms!


Yes the latest blog says it all! Mary F


I only wish that i could have attended last week for Patients Day to see Prof Hughes as talking about APS I last saw him when having my daughter 17 years ago when advising about the pregnancy.

My mother had APS and she was diagnosed after myself and then my daughter has it too.


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