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Systemic lupus erythematosus. Disease outcome in patients with a disease duration of at least 10 years: second evaluation

AJG Swaak, Department of Rheumatology, Medisch Centrum Rijnmond Zuid,Groene Hilledijlk 315, 3075 EA Rotterdam, The Netherlands

H G van den Brink

R JT Smeenk

Department of Auto-immune Diseases, Central Laboratory Blood Transfusion Service, Amsterdam, The Netherlands

K Manger

J R Kalden

Department of Internal Medicine III and Institute for Clinical Immunology, University Erlangen-Nurnberg, Erlangen, Germany

S Tosi

Rheumatology Unit, Istituto Ortopedico Gaetano Pini, Milano, Italy

Z Domljan

Department of Rheumatology and Rehabilitation, University Hospital Zagreb,Zagreb, Croatia

B Rozman

D Logar

Department of Rheumatology, Dr Peter Drzaj Hospital, Ljubljana, Slovenia

G Pokorny

L Kovacs

First Department of Internal Medicine, Dr A. Szent-Gyorgyi Medical University Centre, Szeged, Hungary

A Kovacs

Blood Transfusion Institute, Dr A. Szent-Gyorgyi Medical University Centre, Szeged, Hungary

P G Vlachoyiannopoulos

H M Moutsopoulos

Department of Pathophysiology, School of Medicine, National University of Athens, Athens, Greece

H Chwalinska-Sadowska

Department of Connective Tissue Diseases, Institute of Rheumatology, Warsaw, Poland; 11Department of Internal Medicine, Medical University of Debrecen, Debrecen, Hungary

E Kiss

Department of Internal Medicine, Medical University of Debrecen, Debrecen, Hungary

N Cikes

B Anic

Division of ClinicalImmunology and Rheumatology, Department of Medicine, University Hospital Center, Zagreb

M Schneider

R Fischer

Medical Clinic, Department of Rheumatology, Heinrich-Heine University, Dusseldorf, Germany

S Bombardieri

M Mosca

Universita degli Studi di Pisa, Dipartimenti di Medicina Interna, Italy

W Graninger

J S Smolen

Department of Rheumatology, University of Vienna, Vienna, Austria

Data related to the disease course of patients with systemic lupus erythematosus (SLE) with special attention tothepersistence of disease activity in the long term are scarce. At this moment reliable figures are only knownabout the survival rate as a measure of outcome. The aim of this multicenter study was to describe the outcome ofSLE patients with a disease duration of greater than 10 y.Outcome parameters were two disease activity-scoring systems (SLEDAI and ECLAM), the end organ damage (SLICC/ACR damage index) and treatment. Our results are derived from 187SLE patients followed at 10 different centres in Europe over a period of 1 y. Serious clinical signs or exacerbations, defined by the occurrence or detoriation of already existing symptoms of renal and cerebral nervous systems were observed in 2 - 11% of the patients,seizures and psychosis in 3%, proteinuria in 11% and an increase in serum creatinine in 5% of the patients. No change took place in the overall damage index. Yet, the diseasecourse in most patients was characterized by periods of tiredness (42 - 60%), arthritis (20 - 25%), skin involvement such as malar rash (32 - 40%), migraine (15 - 20%), anaemia(15%) and leucopenia (17 - 19%). Summarizing these results it is shown that patients, still under care after such a long time of having this disease, do have a disease that is far from extinguished.

Key Words: SLE • disease activity • SLEDAI • ECLAM • damage index

Lupus, Vol. 10, No. 1, 51-58 (2001)
DOI: 10.1191/096120301666282314


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