Here are my notes from the 2008 Lupus UK Convention. Accuracy and
completeness are not guaranteed; medical details may be wrong. I did
however pay special attention to use of the word "iron". It was not
mentioned once by any medical or other speaker, neither as a cause nor a
complication; it is not a risk factor, nor is altering ones body's iron
content a treatment.

SYSTEMIC LUPUS INTERNATIONAL COLLABORATING CLINICS INCEPTION COHORT:
ATHEROSCLEROSIS REGISTRY

International co-operation between Lupus treatment centres right across
the world. Distribution of patients known to be different from
world-average (eg less Afro-Caribbean) because not enough centres in the
relevant countries have joined the network (if indeed they exist).
Lupus requires the medics to take a "wide angle view" of the patient.
Patients need understanding and treatment, not sympathy: medics who say
"I know how you feel" do not!

There are three main areas to be measured & treated: disease activity;
damage; quality of life. In the initial stages, disease activity is
high. Later, it usually subsides but reveals the damage it has caused to
joints, kidneys etc. Various indexes have been developed to assist, not
least in inter-consultant communication and in drug trials. Two are
BILAG for activity and SF36 for Q-of-life. There are many new drugs
undergoing trials - the future looks promising. Lupus is getting
diagnosed earlier and treated better.

Q: does having Lupus make cancer more likely? A: No, with one exception
(non-Hodgkins lymphoma) which is very rare anyway.

Q: Lupus and diabetes? A: if you have Lupus then you are less likely
than average to also have diabetes (but you can still have it)

RHEUMATOLOGY DAY UNIT AND HELPLINE

Development of day units, linked to clinics and ward. Patients find it
more convenient and flexible. Very useful for intravenous infusions.
Clinical outcomes the same as for in-patients; small cost saving;
greater patient satisfaction.

Development of nurse-staffed telephone help lines. They can advise etc,
and also refer to GP, consultant, physiotherapy etc.

LUPUS AND CORONARY HEART DISEASE: WHAT IS THE RISK AND WHAT CAN WE DO
ABOUT IT?

Risks of heart disease in lupus patients. Risk assessment tables
developed and used. Given age, gender, weight, y/n smoker, blood
pressure, good- and bad-cholesterol levels: then for non-diabetic people
risk is predictable (eg this patient has a 20% chance of a heart attack
in the next 5 years). Need for and nature of treatment can then be
assessed.

For diabetics, the risk is higher: all else being the same, latest data
are "maybe twice as high". Inflammation looks like being an influential
risk factor too. Long duration of lupus measurably raises the risk;
severity raises it; effective treatment lowers it.

What can the patient do? Cannot change genetics, gender, age. Can: stop
smoking; be active; avoid excessive weight gain; don't snack on
high-density carbohydrates (eat fruit instead); have a good diet.

Medics should: prescribe statins, at a lower threshold than currently
common; treat disease activity more aggressively. Statins are much safer
than aspirin! No other bad-cholesterol-lowering medication is anywhere
near in effectiveness.