E. L. E. F.
CARING AND SHARING, Newsletter 4
Report from the Dutch group

The Dutch group has been well looked after by our Medical Advisory Board.
Recently the standard book "Multi-Systemic Auto-Immune Diseases: an integrated approach" is published at last. Elsevier Scientific is the publisher, and the book came on the market with ISBN: 0 444 81896 0
Prof. Dr. Kater (internal medicine) and Dr. Baart de la Faille (dermatologist) have compiled this book in their unique way they work together.
We will gladly give you a quote from the preface of this book:

"In this book we have brought together the view of different specialists on multisystemic autoimmune diseases. The reason why we have done so is that the clinical expression of these diseases is so variable and their occurrence so scarce that it is difficult for the individual specialist to obtain sufficient experience and knowledge to make the best diagnosis and plan for therapy. We therefore favour a group of specialists which as a team have better abilities than the sum of the skills of each member.

Of course it is not our intention to say that collaboration is better than a solistic approach. However, we pay special attention to the problem of combining the skills of the members of a team. It is a synthetic process which takes time to transform the individualistic attitude many doctors have into a mentality of teamwork. For an optimal consultative situation, interest in the field of the colleague is necessary.

When the dermatologist has insight into the contributions of the internist, rheumatologist, neurologist and immunologist, he will know the right time to consult his colleagues. The internist should become familiar with the dermatological aspects of the disease and their importance for the systemic disease and the quality of life of the patient. This approach may lead to diagnosis and treatment in an early stage of the disease when organ damage has not yet developed to a great extent. However, there is the risk that a great deal of time will be demanded of the team members unless they cooperate."

We expect that Lupus patients, when treated by the above mentioned type of doctors, now have a better chance to get a balanced treatment. Which will lead to a better quality of life.

We are now also working in close contact with the newly formed "Skin Federation", a conglomerate of patientgroups having members amongst them with skin-problems. This organisation has made the appearance in public of our members with skin disorders easier by giving more awareness for this problem.

In the St. Radbout University Hospital at Nijmegen the dermatological research is mainly directed towards Psoriasis.

As probably known this is a frequently appearing skin disease, with features like sharply limited boundaries , slightly elevated red, scaling skin disorders. Furthermore many sufferers have nail disorders and in some case joint disorders. Psoriasis is a chronical disease and therapy is directed to control the symptoms.

Research is carried out in order to find the course of the disease; we and other researchers in the world have probably a long way to go. Meantime we are looking for new therapies to control Psoriasis.

The latest development for therapy is a vitamin-D3 ointment manufactured under the brand name Daivonex. The substance vitamin-D3 is known to regulate the growth and maturing of corrupted cells in the skin.

Also known of these type of products is that they can influence immunological inflammations.
Psoriasis is however not the only skin disease we are studying. Our field of interest is wider and we also investigate skin disorders with mimic psoriasis.
Discoid Lupus is such a disease.

Like Psoriasis the red, sharply limited boundaries , slightly elevated and scaling spots are to be seen. However there are clear differences with DLE. which appears mainly in place exposed to sun light, such as the face and hands but also the skull, where as Psoriasis has a preference for the inner knees and elbows. Furthermore a cured Psoriasis spot does usually not leave a scar, as it does in the spots from DLE. This phenomen makes the reason for proper treatment even more important.

At this very moment in Nijmegen we are involved in the research for a new therapy for DLE. In this research program we try to establish whether a new type of vitamin-D3 ointment is effective on DLE lesions. The ointment is derived from the same family as Daivonex.
From research we already know that the new ointment is inhibiting the immunological inflammations.

As this research is a placebo controlled program I can not yet evaluate the effectiveness of the ointment.

From my contacts with several DLE patients I have learned a few "remedies", I would like to inform you about, hoping that may be more patients can be helped.

One of my patients came up with the following solution for her solitaire lupus lesion in her face: she cut from "plaster under occlusion" the required part and placed it on top of the fresh applied ointment on the lesion, followed by using make-up to camouflage the spot. This did not disturb the action of the ointment and at the same time made the lesion almost invisible.

The above dermatological information was given to us by Dr. van der Vleuten. She will continue her investigations into this matter and when the final results are published, the Dutch group will pass on the information to ELEF to keep our sister-groups informed.