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What to look for?

One of the difficulties for lupus patients is that the disease can show itself in a hundred different ways - indeed it is often called "The Great Mimic'.

Key points

  • Lupus is 'the great mimic'

  • Symptoms include fatigue, rashes, hair loss

  • Test for 'sticky blood'

  • Most lupus pregnancies are uncomplicated

Clinical features of lupus - although lupus can present as an acute (flu-like) illness, more commonly it comes on gradually, often fluctuating in its severity. It is not uncommon, for example, for a woman diagnosed with lupus at the age of say 25, to have been having symptoms for at least 3 years.

Symptoms - the over-riding symptoms are fatigue, aches and pains, rashes, lack of energy. Headaches and gland swelling are common, indeed many lupus patients are initially diagnosed as having glandular fever.

Pre-lupus — it is not uncommon for lupus patients to give a history of vague symptoms going back to their teens, and even earlier. These include growing pains, headache and migraine (especially important in Hughes syndrome), allergies (including insect bite allergies and allergies to antibiotics). A history of prolonged glandular fever (the Epstein -Barr virus) has been suspected as one of the causes of lupus.

Cold circulation - another feature which may pre-date the diagnosis by many years is cold circulation. This usually presents as Raynaud's phenomenon which is a tendency for the fingers (and often the toes) to turn white, then blue, sometimes leading to cold sores or chilblains.

Skin - rashes can occur on any part of the body. On the face, the most well known rash is the butterfly rash on the cheeks and nose. Hair loss can be an important feature of lupus, and a clue to diagnosis. In many cases but not all the skin rashes are made worse by UV light and some lupus patients are extremely sensitive to the sun.

Muscles and joints - rheumatic symptoms are common though, fortunately, rarely crippling. Often pains are more focused on the muscles or tendons.

Kidney - broadly speaking, inflammation of the kidneys is usually painless (silent) and picked up on urine and blood tests.

Brain - any one of the following brain symptoms can occur: headache, depression, phobias and seizures. This is a very important part of lupus and will be discussed later.

Heart and lungs - chest pain (usually pleurisy) is common during the acute phase of lupus. More serious heart involvement is rare, though as lupus patients are now living full and active lives, the focus on heart attack risk factors, such as raised cholesterol, is becoming increasingly important.

Clotting (Hughes syndrome) - in some lupus patients, there is a history of blood clots, such as deep vein thrombosis (DVT). We can now identify this group of patients with simple blood tests. The 'sticky blood' syndrome, also known as the anti phospholipid syndrome or Hughes syndrome, is treatable and even preventable.

Pregnancy - for most lupus patients, pregnancy is uncomplicated. However, for a minority, problems can occur and monitoring is vital. This is especially so for those with Hughes syndrome, in whom clotting in the placenta can lead to recurrent miscarriage, although again this is largely preventable.

In summary, lupus can affect any part of the body, and the diagnosis can be missed. Furthermore, the up and down nature of the disease adds to the problem.

The main message for doctors and patients alike is to consider lupus as a potential diagnosis. The good news is that a simple blood test is usually sufficient to diagnose the condition, allowing treatment to be started in time to prevent serious organ damage.


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