Psychological and Psychiatric Problems in Lupus

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.
A number of different potential psychological and psychiatric problems can affect those with lupus. Difficulties may arise from the disease process itself, which commonly affects the brain, or from the general effects of having a chronic long term health condition with a variable course – symptoms of fatigue, pain and myalgia may contribute. Depression and generalised anxiety can occur as a reaction to such lupus symptoms and if the underlying disease process can be better controlled, features of low mood, loss of interest and insomnia may improve.

There is still some stigmatisation of psychiatric illness, especially if patients or the involved doctors and nurses believe the symptoms are just a part of the illness, or ‘all in the mind’. Rates of psychiatric illness, depression and anxiety are especially prevalent in younger women in the general population and so can be present on a relatively regular basis in those with lupus. It can be difficult for people to explain complex problems in a busy outpatient clinic, so it pays dividends to give attention to the patient’s emotional as well as physical health. It can be difficult to decide if symptoms such as fatigue and lack of energy are due to physical or mental causes and such a distinction may be unhelpful as physical and mental symptoms frequently co-exist and exacerbate each other. One solution is to investigate and treat the potentially treatable causes and then deal with other symptoms using a practical and problem-focussed approach.

Lupus can directly affect the brain and is probably the most feared feature for the patient. These effects may be difficult to quantify, varying by day or by week and making assessment difficult. The pathological process underlying the disorder may depend on immune-complex deposition in the brain, vasculitis or stroke. At its most severe, lupus may cause seizures, strokes, memory loss and psychosis. Pathological causes of these neurological and psychiatric effects are varied and need proper investigation, especially as the response to typical psychiatric drugs such as neuroleptics (anti-psychotics or major tranquillisers) or mood stabilisers (such as lithium or other drugs used in epilepsy such as carbamazapeine) may be limited, and a better response may be obtained with active treatment of the underlying disease process. Steroids themselves may cause depression, confusional states or euphoria and less severe symptoms such as poor concentration, headache and mood swings also occur.

To further complicate the picture, neuropsychiatric symptoms are commonly found even when the biochemical markers of the disease are normal. A history of brief confusional states, delirium or psychosis, with clouding of consciousness, agitation, fear, visual or auditory hallucinations or paranoid ideas (such as feelings of persecution) is relatively common. These states are fortunately brief and last only hours or days before subsiding. Occasionally lupus causes an illness which is closer to schizophrenia or bipolar affective disorder (manic depression). A very small minority of patients go on to develop a dementia syndrome, with loss of recent memory, personality change, speech and co-ordination problems.

The treatment of the psychiatric aspects of lupus clearly depends on the severity of the illness and whether the causes are directly or indirectly attributable to lupus itself or due to co-existent psychiatric problems. Some conditions are brief and self-limiting, requiring only reassurance and brief support. Where there are longer-term emotional problems or recurrent problems that are severe and distressing, referral to a psychiatrist is appropriate. When assessing patients who are very distressed it is appropriate to enquire sensitively whether they have felt that life was not worth living or demonstrated any example of suicidal ideation. Counselling or psychotherapies such as cognitive-behaviour therapy or more analytical therapies may be very helpful. Talking therapies such as cognitive behavioural therapy (CBT), motivational interviewing and counselling are proven to be effective in people whose fatigue is not obviously physical in origin.

For more neuropsychiatric presentations of the illness, the psychiatrist or psychologist may be able to help by assessing cognitive impairment or memory problems. These may require lengthier psychometric testing, which may be able to pinpoint functional difficulties such as visuo-spatial problems or language problems. Imaging investigations such as magnetic resonance (MRI) and CT scanning are also extremely helpful, as are EEG recordings. There is now access in some centres to positron emission tomography (PET) scanners, which are becoming increasingly useful.

Importantly for the nurse, psychological and psychiatric distress is seen in lupus and the nurse is in an important position to enable referral to appropriate help for those suffering difficult symptoms to control. Actively enquiring about the patient’s mood is important during assessments, discussing and describing ways of offering access to services, or review with consultant colleagues for consideration of increasing disease treatments where appropriate.