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Psychological aspects of Cutaneous Lupus - Angie Barwick RGN, JP.

The following article has been written by our nurse online, Angie Barwick, for doctors dealing with Cutaneous Lupus.

Many of the emails I receive are from patients requiring information on skin manifestations. The scarring which can occur in Cutaneous Lupus may affect the patient, both physically and mentally. Interestingly, emails regarding skin problems and hair loss increase considerably during the summer months, leading me to think that their education in sun avoidance and effective sunscreen preparations is somewhat limited. Another reason may also be due to more of their body being exposed to ultra-violet light.

Effects on Patients with Cutaneous Lupus

Probably the most important concern for patients with Cutaneous Lupus is to have their skin problem taken seriously. The effect of skin disease is often enormous, and this is all too often overlooked. The wider issue here is that skin disease is often regarded as unimportant, not only by the general public, but also by many doctors. It important to recognise the far reaching impact that a skin problem can have, particularly if abnormal skin is visible to others.

Light sensitivity in Lupus means that this is usually the case, whilst self-confidence, embarrassment, relationships and social life are often affected, and anxiety and depression are common. People with skin problems are often stared at and stigmatised because of their appearance and this can have devastating effects on their social lives and in the work place. Patients comment to me that their facial disfigurement has prevented them from applying for certain jobs. I have even heard of patients who are reluctant to leave their homes and of children being bullied. One comment made to a patient was, " how dare you come out of your house looking like that"

I would just like to share a few other examples of this from emails I have received in the past: -

" I have just been diagnosed with discoid lupus. I really need to see someone who can help/advise as I have already given up my career as an actor because of my skin etc. Would be most grateful many thanks."

" I have learnt to cope with most of the painful symptoms but there is a particular one I am having difficulty coming to terms with - the discoid scaring on my face. I am interested in hearing from any other patients who have had to learn to deal with this, and also if there is a treatment out there for it? I have been trying to find more information regarding plastic surgery for discoid lupus. I recall hearing this was an option. My social life and self-esteem have both been demolished since having lupus (due to the terrible facial rash leaving scars). Is there a treatment in the UK that can correct my scarring and in turn my self esteem?"

"In the first instance, my daughter's illness has cost her; her relationship; her hair loss; her skin problems etc. etc., added to the strain and in the end all was too much for her previous partner to cope with. This had an enormous affect on her confidence and so tried to rebuild herself by relocating to live with me and finding herself work (she had previously lived and worked in Kent which she loved, and also had a job that she loved, but could not afford to live and work there alone. I live in a small village in Wales, which is the complete opposite to what she is used to). However she has lost two jobs and the recent news that she cannot have funding for her wig has inevitably had a dramatic affect on her. She sees no option but to sell her car to fund it as she feels she cannot face the world without it and so will find it more difficult to look for employment without transport and so has a spiralling effect"

" They have prescribed me on hydroxychloroquine but I am really depressed about my looks, I feel very low, upset and angry, sometimes I feel burning my face is the only solution. Please tell me absolutely for sure that the scarring on my face will eventually go or not. What do my hopes hold for me? "

Early Intervention

Patients find it difficult in the short consultation time allotted to put across to their doctors their feelings of isolation and in some cases their desperation.

For these reasons it is vital that health care workers strive to offer the best possible care as early as possible. This is especially important for those patients who have discoid lupus, which can cause permanent damage. Once scars are present no medical treatment can reverse them. The major problem with discoid lupus is that even after it has been successfully treated; patients may be left with unsightly scars, discoloured marks and alopecia. Hair loss is a major problem, particularly for women. Hair to a woman is their 'crowning glory,' and hair loss affects their feeling of femininity. The psychological impact for a woman is dramatic. Patients often comment that in the vagaries of lupus, and all its attendant medical symptoms, hair loss is one of the symptoms most difficult to deal with.

Recommendations

The most important basic measure is sun avoidance. Many discoid lupus patients do not realise that they are sun sensitive. This may be because there is often some delay between sun exposure and the start of the lesions. Patients also do not realise that it is not only direct sunlight, but sometimes sun passing through glass that can 'trigger' or worsen the lesion.

We advise patients that the most sensible measure to avoid sunlight is to cover up; to wear long sleeve tops; long trousers, and ideally a broad brimmed sun hat. We recommend that patients avoid the sun if possible between the hours of 11am and 3pm.

The regular use of sunscreens is also of vital importance. Many people often miss areas such as the ears and temples. The sunscreen needs to be of a high factor not lower than 25, and to have 4 or 5 stars of protection on the bottle. E45 Uvistat and ROC preparations can be supplied on prescription.

Sunsense is an Australian range of products. This sunscreen is widely recommended for its skin protection. They produce a Factor 60 tinted sunscreen, which is waterproof and lasts up to 4 hours.

There are also tinted products for black skins. Generally sunscreens need to be applied every 2/3 hours and after swimming to give maximum protection. Sun beds and lamps are not recommended.

Recognised Treatments

The main topical treatments are steroid creams and ointments, strong topical steroids are usually required. However if used for several months there may be some skin thinning particularly on the face. The risks need to be weighed up carefully by the doctor and the patient. Most patients find that scarring from untreated lupus is far more disfiguring than the worst skin thinning.

Antimalarials, which include Hydroxychloroquine and Mepacrine, may be indicated where skin disease is more aggressive. Tacrolimus is also now being used to good effect.    Supplements such as Aloe Vera, Bio-oil, has been effective and Vitamine E can also help to fade the scarring. Eating a healthy diet with lots of fruit will help to maintain healthy skin.

Fluorescent lighting as well as ultra violet rays can affect some patients. Many offices are illuminated by fluorescent lighting and patients can find it difficult to work in these conditions. Protective sleeves for the lights and Dermagard Filter film is effective in blocking u/v light through windows.

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