Some Commonly Presenting Symptoms

This site is intended for healthcare professionals as a useful source of information on the diagnosis, treatment and support of patients with lupus and related connective tissue diseases.

Some commonly presenting symptoms:

Skin rashes – sometimes a ‘butterfly’ rash, a pattern of red raised rash over the cheeks and bridge of nose, also seen in sun exposed areas, such as the neckline, the forearms, tops of feet or backs of hands.

Joints – (arthralgias and arthritis) can be experienced throughout the body. This does not usually lead to damage of the joints, although in some, swelling of the joints can be seen. In rare cases where
damage is seen in the joints on x-ray, it may be associated with a secondary diagnosis of rheumatoid arthritis.

Fatigue – excessive fatigue, limiting everyday life, often with unrefreshing sleep.

Migraines/headaches – the ‘lupus headache’ is described as one that is very severe, and does not respond to conventional pain killers, can last for days and usually brings the patient to A&E before the Rheumatology clinic to have tests for other conditions such as meningitis. Fortunately it is very rare. Ordinary tension headaches and migraine are more common but are not due to lupus.

Hair loss – a distressing symptom, where large amounts of hair are seen on the pillow, in the plug after a shower/bath, fill hairbrushes and vacuum brushes. This can either be patchy or diffuse and all over the scalp, and spontaneous hair loss without bruising is typical.

Mucosal ulcers – recurrent crops of mouth, nasal, and/or genital ulcers that can struggle to heal; usually a painful condition, but not always.

Dry eyes, dry mouth and dry vagina – often worse in those who carry the anti-Ro or anti-La antibodies, this symptom is usually very uncomfortable

Altered kidney function – often first detected through finding protein and/or blood in urine dipstick testing and can vary from mild to a severe form including kidney failure. Lupus kidney involvement is usually painless, (unless there is infection) and so frequent regular urine-dip is essential. Urinary infections can also occur in the lupus patient, causing painful, and/or frequent urination, often with urgency along with systemic un-wellness, and needs appropriate antibiotic treatment.

Circulation & blood changes - such as;
- cold hands and feet, known as Raynaud’s phenomenon.
- clotting problems, seen as increased bruising, or nose bleeds, (or very occasionally haemoptysis) due to a reduction in platelets or anticoagulation therapy.
- blood clots, for example in those with antiphospholipid syndrome (APS), which can be seen in recurrent deep vein thrombosis, pulmonary emboli, myocardial infarction or stroke under the age of 50 years, ministroke episodes, recurrent miscarriages or still birth.
- low lymphocytes and/or low neutrophils. Lupus patients can have low specific white blood cells (WBC). Sequential blood tests and following what is the patients’ usual individual trend is very important, and not assuming the value is due to their medication.

Heart and lungs - such as;
- Breathlessness and sharp pains in the chest. This could be pericarditis (inflammation of the lining of the heart), pleurisy (inflammation of the lung lining), or pulmonary emboli.
- Heart attacks and stroke. There is an increased risk for everyone with lupus but especially those with antiphospholipid syndrome.
- Raised blood pressure. It is important to monitor and maintain good blood pressure control in all our patients of up to 130/80 mmHg. Raised blood pressure can be present when the kidneys are involved,
due to atherosclerosis or secondary to the use of long-term steroids.

Brain - this is a rare complication and the one that many patients are most worried about. We can be strongly reassuring that brain complications due to lupus are rare. Symptoms can include fits and seizures, severe memory loss and other psychiatric complications. Lupus patients can often feel low in mood and depression is common. This can arise from the disease process itself, which commonly affects the brain, or it can be the result of daily adaptation to chronic symptoms, particularly if these are unpredictable and impact on activities of daily life. Depression does not require immunosuppression. High dose steroids can make mood changes and sleep disturbances worse. There is much that can be done to support those with low mood, usually by self-referral to local treatment, or accessed through the patients’ GP. True clinical depression is seen in lupus, and requires further appropriate treatment which is usually initiated by the patient’s GP.