Dr Graham RV Hughes: Blog for March 2019 - LUpus Patients Un...

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Dr Graham RV Hughes: Blog for March 2019

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February is the month for the Barcelona ‘Ten Topics’ meeting – an outstanding annual event – and this year was no exception. A brilliant two day meeting, this year attracting 230 trainee doctors.

The atmosphere was wonderful – a packed auditorium and a mega volume noise level in the coffee break. As in previous years (the Barcelona Ten Topics meeting is 21 years old this year) there was an emphasis on Lupus and Hughes syndrome, and the meeting was enlivened by a series of “pavement consults” (an idea borrowed from America I think, in which difficult cases are discussed by a small team of experts).

Ten Topics is now held in seven international venues – London, Barcelona, Rome, Nice, Beirut, Buenos Aires, and Hong Kong – I estimate that well over 1500 young doctors internationally are taught with the help of the ‘Ten Topics’ programme. Incidentally, the London Ten Topics 2019 meeting, organised by Professor Chris Edwards is planned for London Bridge on July 11th and 12th.

Patient of the month

Infertility

This month, a short case report and an equally short discussion. But a major, major topic.

Mrs T.T., aged 24 got married and she and her husband planned to have a family sooner, rather than later.

But the months turned into four years, and still no pregnancy. Both she and her husband were tested in an IVF clinic – but still no pregnancy.

Mrs T.T’s health was good (apart from – guess what – a tendency to migraine attacks). However, out of the blue, at the age of 28, she developed a big DVT – with a possible pulmonary embolus. She was treated firstly with heparin, followed by warfarin. Three months later her pregnancy test was positive. The warfarin was stopped and the pregnancy was completed on heparin. (And with no migraines during the whole eight months).

At some stage, she was blood tested for aPL (anti-phospholipid antibodies) and found to be strongly positive.

Any further pregnancies? Yes. Three. All with the same pattern – warfarin now continued by her physicians because of fears of more thrombosis, but stopped when the pregnancy tests became positive (standard practice) and changed to heparin for the pregnancy.

What is the patient teaching us?

Recurrent miscarriages and even later pregnancy loss (stillbirth) are well recognised features of Hughes syndrome. But infertility? Certainly many cases of recurrent very early pregnancy losses have been labelled as “infertility” in the past, and in the literature there are one or two published studies of aPL infertile patients.

Although probably rare, ‘sticky blood’ should be considered – especially if the background history (migraines? thrombosis?) is suspicious.

If there is a link, possible mechanisms could include antibody attack, or, impaired circulation to the reproductive organs.

Lots of maybes – but potentially important.

PROFESSOR GRAHAM R V HUGHES MD FRCP

Head of The London Lupus Centre

London Bridge Hospital

Source: ghic.world/blog/march-2019

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Di01 profile image
Di01

Hi how do they detect for lupus i'm so ill & my drs have been neglecting me for months i wake up with flu symptoms everyday my throat so dry my eyes dry ears & nose also have jerking feet pain tightness of them & i get rashes pinprick red sports coming now two lymph nodes i kno deep down ive got sj but my dr is just hard work & doesnt want to spend money on finding out what condition ive got i'm constantly fatigued & weak really fed up now with all these health issues & not getting anywhere fast cant do a simple task if there is a test i could do privately i would but i dont kno where to start only waiting on a neurologist for jerking & spasms in my legs any help or advice would be grateful for?

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lupus-support1Administrator in reply to Di01

I am sorry you are going through so much pain & distress.SLE is very difficult to diagnose unless you have a "malar" or "butterfly" rash, lupus nephritis & a positive ANA: most people do not present in this way.

There isn't a single blood test to confirm SLE. Diagnosis is made usually via clinical observation over time. Unfortunately, many women do not have a diagnosis for mayn years. This is partly because most doctors, eve rheumatologists, have never treated a patient with SLE or systemic lupus erythematosus.

You will need a referral to a diagnosis, preferably a doctor who sees and treats lupus patients daily at a clinic. To give an example of how difficult it is to make a diagnosis, it took Dr Graham RV Hughes 18 months to diagnose me because to make a wrong diagnosis is detrimental to the patient. This doesn't mean the symptoms are not treated.

I recommend you write down ALL symptoms & illnesses from birth, no matter how irrelevant it may seem. Include symptoms such a depression and anxiety.

Keep a diary of symptoms - and also try to include any observations such as, if you eat certain food, symptoms such as x,y,z occur.

All I can suggest is to see your GP/Primary Care Physician who will decide to refer you to see a specialist or ask for specific tests.

LUpus Patients Understanding & Support (LUPUS) has another website where there is far more information. You must register with the site - I know this is a pain - but it prevents spammers & bots. Please read the instructions about using the DOB or date of birth using this format:

nn-nn-nnnn where n=number. For example 5th May 1993 = 05-05-1993

Any problems, please let me know. I won't be around until Monday.

With good wishes,

Ros