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Professor Graham Hughes' Monthly Blog March 2017


BLOG March 2017


This week we welcomed to the London Lupus Centre a visiting group of 10 nurses from Daytona State College, Florida. They have a particular interest in Hughes Syndrome, so we organised a mini symposium for them and also included a tour of the facilities in the Shard. Fortunately it proved to be one of London’s best and brightest sunny days!

I realise that the majority of my blogs proclaim clinical success (I guess that’s natural), but in today’s blog, I want to concentrate on one aspect of Hughes Syndrome where there is uncertainly. How pro-active one should be with treatment of a patient with positive tests but little in the way of clinical problems?

Patient of the Month

Ms P.J., aged 47, is a ‘high flying’ executive in a fashion company. Her job includes frequent foreign travel.

Ten years ago she was investigated for a complaint of general fatigue and lupus had been suggested (a cousin had been diagnosed with lupus). Her tests for lupus were negative but she did have positive antiphospholipid tests (aCL medium positive, anti-Beta2 medium positive, lupus anticoagulant negative).

A past history for features of Hughes Syndrome (apart from, possibly, migraines) was negative. No thrombosis. No miscarriages (she had had one pregnancy – a 23 year old daughter).

The migraines had been frequent in her teens – sometimes as common as weekly. A neurologist had arranged a brain MRI which was clear.

However, in her 20’s the migraines slowly disappeared. She remained well and on no medicines for approximately 5 years.

She then developed a new complaint, that of frequent acute ‘stabbing’ pains around the right eye. There was no loss of vision, or any redness of the eye. She was seen by a neurologist and an ophthalmologist, who found no obvious abnormality. Again a brain MRI was normal.

The eye/eye socket pains became worse.

Where to go next?

The neurologist could find no obvious cause for the symptoms. Blood tests were normal (apart from the positive aPL tests – giving much the same results as those 10 years ago).

Would aspirin be worth trying………?

Yes….. she started baby aspirin, 75mgs daily. Success!

Almost total resolution of the acute eye pain attacks.

Back to full time work.

What is this patient teaching us?

As the public and the medical profession become aware of aPL testing, and the importance of Hughes Syndrome, it is inevitable that we will see more patients with positive tests (for example, relatives or offspring of APS patients) but without any medical complaints. (For example, the longer term follow-up of women found positive during pregnancy assessment.)

At present, most doctors might give no treatment, or, at most, daily low dose aspirin (that, I must say, is my own practice).

But, in patient Ms P.J., there were symptoms, albeit one not readily associated with Hughes Syndrome.

In this patient, the symptoms were significant and a trial of 75mgs daily aspirin produced a great result.

We will, of course, follow-up Ms P.J. in the future.

Professor Graham Hughes

Head of The London Lupus Centre

London Bridge Hospital

4 Replies

I used to have them through the centre of the eye, but never both eyes at once, only one, not had that since I started on Aspirin, twice a day. MaryF

Excellent. It just shows that you shouldn't close the book that hasn't been fully read yet

Gosh. Already diagnosed with APS and I get those stabbing eye pains as well. They stop me in my tracks. I never thought they were related so never mentioned it to the rheumatologist but dealt with it as 'an eye issue' separately. Just one eye usually. Is there any place this damn illness doesn't attack?

Lure2 in reply to Puska

Hi Puska,

I had neurological symptoms before I started first Aspirin and then Warfarin. Now gone when on an INR of around 4.0.

They were micro-emboli also with ear/balance-problems. They are never seen on a Scan so difficult for Doctors to understand.

I wonder if you have read "Sticky Blood Explained" by Kay Thackray? She has got Hughes Syndrome/APS and writes about different symptoms incl these eye-issues also. Good also for relatives to read to understand how it is to live this s illness. It is written some years ago but the symptoms are the same as we know. Hope you can buy it in Australia.

Best wishes from Kerstin in Stockholm

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