Andy's notes from Lupus UK's 2004 conference.

NB: I may have misheard, misread, skipped vital bits or got it
completely wrong. Use this as a thought-prompter, not an authoritative
guide.

       "Managing the complications of lupus and its treatment" by Dr
       Elizabeth Price - Consultant Rheumatologist, Great Western
       Hospital Swindon

Incidence is 1.4 to 7 per 1000 in USA & Europe. 3 to 5 new cases arise
each year per 10,000 population. 10-year survival is 77%-85%; 20-year is
70%; so the long-term consequences of the disease and of its treatments
are beginning to appear. [Andy's comments: 'survival' is from diagnosis;
I think that the figures didn't separate the cause of death, eg someone
killed in a car crash may have had lupus but didn't die from it.]

In Discoid lupus the lesions are very photo-sensitive: sunblock may not
be enough and protective clothing may be needed; internal organs are
usually OK; smoking is especially bad.

Infections, particularly in the bladder, can mimic flares. They need
distinguishing from flares, and treating appropriately.

       "The effects of lupus on dental treatment" by Dr Jane Luker -
       Consultant in Dento-Maxillofacial Radiology Bristol Dental
       Hospital

If "you have always had mouth ulcers but they have recently got worse"
then there may be a problem and investigation is needed. Anemia is one
possible cause.

       Barbara Grimster - National Secretary, LUPUS CANADA

Any travelling Lupies are invited to make contact via their web site,
and to visit local group meetings

       "Lupus - the history, geography and science" by Prof David
       Isenberg - ARC Diamond Jubilee Professor of Rheumatology at
       University College London

If one identical twin has lupus then the other has a 25% chance of
having it too; if one NON-identical twin has lupus then the other has an
8% chance of having it too. This shows that getting lupus has a genetic
component but is not totally genetically determined

       "Cerebral Lupus" by Prof Robin Brey MD - Dept Medicine/Neurology
       the University of Texas Health Sciences Centre, San Antonio
       Texas

80% of lupies have some nervous system effect at some stage of their
disease. Only 2 types "count" in the standard diagnostic criteria but a
study has identified 19 separate types! PET scans are useful to see
what's going on. Causes include lupus, and secondary effects of
infection, kidney problems etc.

CNS lupus can be the sole manifestation - you don't need to have
something else going on. Often, CNS is the first symptom although others
appear later.

What to do? avoid sedating medicines; reduce steroids; suppress flares &
organ damage; consider treating APL. If you are depressed seek
treatment.

The problem is *retrieving things from memory*, not putting them there.
Try using checklists; diaries; postit-notes; a big calendar; turn off TV
and radio when speaking to people; avoid large groups of chattering
people; do not drive while using a mobile phone.