Sticky Blood-Hughes Syndrome Support
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Professor Graham Hughes' March Blog 2016

There is a link to a paper in this, (I will put the actual paper underneath).

Monthly Blog

March 2016

Easter weekend. A warm, sunny Good Friday after three months of grey skies. Time to return to my ‘blog’ and for me a long awaited return after illness.

Last year, before my illness and operations arrived in August, was the usual mix of clinics, lectures, writing and home life. One of my most memorable visits was to the Welsh history of medicine meeting (an annual event), this year in west Wales (Aberystwyth). My topic was the history of lupus and the discovery of Hughes syndrome.

For me, this was a return to the town of my childhood and early teens. The train journey – via Shrewsbury and the Cambrian Coast Express over the Welsh mountains – was a dream. Down to the coast at Machynlleth and Borth – the Welsh drizzle closing in, and the warmth and enthusiasm of my Welsh physician colleagues.

Late last year, I received an invitation from Dr Simon Helfgott (Boston), the editor of Rheumatology News, to write a major article on Hughes syndrome. Now published, the article is clinically based, and, I hope it highlights the fact that not all of Hughes syndrome is ‘thrombosis and miscarriage’ but includes features as varied as bone fracture, sleep disturbance and stillbirth (a topic I will cover in this month’s blog).

The article is published in “The Rheumatologist” (Vol 10, No 2, Feb 2016) ( and has been well received – including the following email from Professor Gerry Weissmann, dean emeritus of New York University School of Medicine – one of my medical ‘heroes’ – “What a masterful article by a giant in our field…to be treasured.” I must say that such unexpected praise was very good to read however much one pretends to be immune to it!

My own praise goes to the medical team who have looked after me – and a hero badge goes to nurse Garcia whose patience and professionalism have been truly outstanding.

Case of the Month

This month, the newspapers have had a publicity campaign on stillbirth, The Times calling it one of the greatest tragedies known to mankind. Many of the articles have been critical, arguing that our national figures are not great, and that more research is needed. Sadly, one known cause is the antiphospholipid syndrome (Hughes syndrome) – a potentially preventable cause.

Patient Mrs L. G.

I received an email from a doctor based in Scottish Western Isles. She was looking after a 50-year-old woman whom she suspected of having Hughes syndrome – but with negative tests. How should she treat the patient?

The history was complicated. The patient’s mother (migraines and 2-3 miscarriages and 1 successful pregnancy) had died of a sudden stroke aged 38. Mrs L. G. had suffered frequent headaches and balance problems since her teens. Aged 18 she had been investigated for a prominent jerky tremor in the arms - St Vitus Dance had been mentioned but the problem resolved. Between the ages of 20 and 25, she had suffered five failed pregnancies, usually ending in miscarriage at three months.

Five years later, at the age of 30, she became pregnant again. This time things went well until the eighth month, when tragedy hit. A dead baby.

Not surprisingly, the stillbirth disaster seemed to kick start a number of new problems – a return of the frequent headaches, fatigue, balance difficulties, and memory loss. A trial of antidepressants – no improvement. And then in 2015 a young doctor in the remote Scottish western isles wrote:

“Dear Professor Hughes…I would be most grateful for your advice…I suspect diagnosis of Hughes syndrome, but the blood tests are negative. I trialled baby aspirin, but the response was equivocal. What do you suggest?”

Obviously the doctor was right to consider Hughes syndrome – the migraines, the five miscarriages and stillbirth, the possible St Vitus Dance and a possible family history. She had also drawn a blank with other tests including a brain scan in Glasgow’s teaching hospital.

My advice in this situation, when aspirin (and/or Plavix) have failed, is to consider a three week course of heparin – a daily injection of course, but very safe and frequently providing very useful information. Some weeks later I received a follow-up email from the doctor. I quote verbatim:

“…you kindly suggested a trial of Fragmin (heparin) two to three weeks trial. Amazingly she tells me that she had a fog which has been lifted off her, better concentration, better memory, has better and sound sleep, she wakes in the morning refreshed from sleep.” [“I simply had my life back. Thank you.”] These were her own words.”

What is this patient teaching us?

As always, a number of lessons. Firstly the importance of this history – so many clues in this patient.

Secondly, the problem of negative tests. In a busy clinical practice here at the London Lupus Centre, I regularly see patients whose history strongly suggests Hughes syndrome but the blood tests are negative. For me, the subject of so-called “seronegative Hughes syndrome” is vitally important. For the doctor, the message is “the tests are not infallible”. For the patient, as in the case of Mrs L.G., the diagnosis and treatment can be “life changing”.

And finally, the stillbirth. Sadly, a number of our patients have suffered stillbirth – late pregnancy loss. In a number of cases there had been a past history of repeated early miscarriages. At the recent world conference on antiphospholipid antibodies, the research group led by doctors Ware Branch and Silver in Salt Lake City presented a paper confirming a link between some cases of stillbirth and Hughes syndrome (I have attached a few key references at the end of this blog).

I have suggested a number of times that in the “first visit” pregnancy clinic, the obstetrician or midwife should ask three questions which might lead to a blood test for Hughes syndrome:

1. Have you had a thrombosis/clot?

2. Do you suffer from migraine?

3. Do you have a family history of autoimmune disease (thyroid, lupus, rheumatoid, M.S., Hughes syndrome)?

Three minutes which could prevent a pregnancy loss – and maybe much more.

Professor Graham R V Hughes MD FRCP

London Lupus Centre

London Bridge Hospital


1. APS: What rheumatologists should know about Hughes syndrome [The Rheumatologist Vol 10, No 2, Feb 2016]

2. Hughes, GRV: Antiphospholipid and stroke. Lupus 2010 April 19 (5) 555-556

3. Hughes, GRV: Hughes syndrome/APS - 30 years on, what have we learnt? Opening talk at the 14th International Congress on antiphospholipid antibodies (Rio de Janeiro, Oct 2013). Lupus 2014 23 400-406

4. Silver RM et al. Antiphospholipid antibodies in stillbirth. Obstet Gynaecol 2013 122(3) 641-

This paper below, is the one embedded in the article above, so read here:


22 Replies

Thank you for posting-most interesting. I had a stillbirth back in the 80's, most distressing & 20 years before being diagnosed with APS, great that medicine has come so far! 

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Yes, progress indeed.   MaryF


Thank you Prof Hughes and thank you Mary!


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Keep well Kerstin!    MaryF


Thank you Mary.  ⭐️⭐️⭐️⭐️⭐️


No problem, so easy to put on here.    MaryF


Many thanks to Prof. Hughes. Very happy that you are on the mend and pleased to see your valued blog back.

Thanks for this post Mary.


Yes we all wish him well and a speedy recovery.    MaryF


Thanks to Professor Hughes and Mary, and I am sure we all hope that Professor Hughes has made a full recovery.


I am sure he will be writing more in the future.    MaryF


Thank you so much Mary for sharing this. I have triple positive APS with all sorts of symptoms and Lupus amongst other conditions. I too am hoping for a trial of Heparin to see if that lifts the fog and other symptoms. I go back to Prof D'Cruz end of May, after seeing Prof Guy L in Neurology,  am really hoping for some help, you get so desperate sometimes dont you? Does anyone sometimes get so overwhelmed and downright plain confused with all this, not to mention work colleagues who just dont know what to make of you??!!


Well said on all accounts.   MaryF


Hello yes I'm confused everyday of my life!!! I don't say this to anyone, but my sister noticed the other day that I was not making any sense! She didn't know what to make of it! I couldn't express myself because I forgot most of the words! I have memory lapses! If I take my meds in the AM I must write it down cuz by afternoon I can't recall! I don't know what I'm doing at times and can't even explain it! I'm not properly anti coagulated for 6 months since being DX'd! My doc says it's because I'm not eating and have no appetite! Food give me trouble so I stay away from most food accept rice , broth and bananas! Now gluten free which helps! I'll never go back to not being gf!!! It causes much pain for me! It's now finding out what I like and don't like! It's a whole new confusing world for me! Loosing my leg to this disease when I was undiagnosed was more than enuf! Now I have Sojerns and RA back again! As a child I had JUVENILE RA AND Now they say it's back! I really don't want to know of any other autoimmune diseases I may have and like God to intercede at some point b4 my suffering becomes too overwhelming! I have no one! I've always been the care taker! Now I need help and their all lining up at my door begging to return the favor( not really I'm being sarcastic) I did a wonderful thing for myself today! I hired someone to come in a few days a week to help me with my hubby, and myself and my mentally retarded stepson whom has William Syndrome and I've taken care of for 36 years! Am a HOMECARE nurse for almost 40 years and have helped the world! I'm still waiting for one of those dear dear friends to come and offer me a cup of tea! I can wait till dooms day and it will never happen! I did something for ME TODAY AND IM PROUD TO SAY IT! I hope you are doing well and please keep me posted as to what ur Rheumy says! Remember there are all kinds of Charletons out there and b careful what doc u choose no matter what his credentials are or what research he does! They mostly all think they're God! They're not they bleed from a stuck finger just the way we do! Lol... Please keep in touch and thank you for ur post!!! It's helped me beyond words! God Bless You and may He always hold you in the Palm of His Hands!!! By the way my hubby has Alzheimer's and I needed a helping hand! Thank you one day at a time!!!


Keep an eye on your INR and make sure they regularly test your vitamin D, B12 and iron, this is important.   MaryF


 Sounds like you've really had a tough time, am glad you have got some help recently to give you a bit of a break. I hope you are getting some decent care from the specialists. You know what? I think we are the bravest, strongest, and most resilient people having lived through what we do on a daily basis, it takes real strength to keep going through the battle and try to stay positive and show up each day. I know people laugh at me when I cant remember things or just come out with the wrong words, or cant remember what someone just said. Im tired, im achey, but still get up each day and try to carry on, as we all do, we should give ourselves a huge pat on the back. God bless you too, one day at a time - thats the best way xxx


OMG what a most amazing blog you have Professor Hughes and Mary!!! Thank you so much for this most informative article and blog! I went to an expert Rheumotologist in NYC who does not believe in serine fatigue? Is there such a thing as seri- negative! Just curious because I just read about it in this article and I'm confused! 


Nothing to do with me, the blog... I am merely pushing it out there, as the more these are read the better.  I shall look forward to getting the next one and the medical article.   MaryF


Yes it may be easy to put on here Mary, but if u didn't take the time or feel the way you do then we'd be in trouble !!! You r a kind caring soul that has no idea that you r a hero in our eyes! You don't want the recognition and that's what makes you so special! As well as Kerstin, Dave and the Beauty Not so Fav!!! Lol... Godspeed his way to all of you extraordinary people! We need the world to behave like you! It's a better place because of you Fab Four! And I don't mean The Beatles!!! LMAO!!!

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That's exactly what I mean Mary, look how fast u liked my reply! Do u have any idea how important it makes a person feel to be heard in the way u FAB 4 HEAR???


Keep well, we are all on a journey together.... MaryF


Hurrah, he is back 🎊🎊🎊🎊🎊🎉🎉🎉🎉🎉🎇🎇🎇🎆🎊🔆🔆🏆🍀🍀🍀

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Hello. It's lovely to hear you are on the mend. This is a very interesting blog. I agree that ladies who come to their first booking clinic after been diagnosed pregnant should be offered the blood test to check for APS. Many ladies could have been spared the trauma of miscarriages if it had been a routine blood test. I for one would have offered the test to ladies. A retired midwife.

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