Background/Purpose: Very long-term follow-up has rarely been reported in lupus patients. We report on the follow up of (up to 37 years) of our lupus cohort from January 1978 to December 2015.

Methods: We have undertaken an exhaustive case review of our entire cohort of lupus patients at University College London Hospital. Electronic and paper records were reviewed for demographic, clinical and pathological outcomes of our patients. For those patients no longer under active follow up, information was retrieved through telephone consults and discussions with primary care physicians and other rheumatologists.

Results: 673 patients (M 55 F 618) with lupus were included. Patients were predominately Caucasian (58.4%) Afro-caribbean (14.9%) and South Asian (8.8%). Average age at diagnosis was 28.9 years (SD +/- 12.5). Major lupus manifestations were arthralgia/arthritis (90.9.2%), rash (66.2%), photosensitivity (41.5%), serositis (37.8%), oral ulcers (27.3%) and alopecia (23.7%). Over a third of patients had renal involvement (34.6%). 90% confirmed on biopsy. 46% class IV, 22.3% class III and 17.2% class V. 20.8% patients had major CNS involvement at some point in their disease. 93.6% of patients were ANA positive (titre>1:80) . 62.9% were double stranded DNA antibody positive, 48.6% had low C3. Other autoimmune conditions diagnosed in our cohort include hypothyroidism (7.7%), Sjogrens (7%) and anti-phospholipid syndrome (6.8%). 2.5% of patients were also diagnosed with idiopathic thrombocytopenic purpura and 4.6% developed haemolytic anaemia. A large majority of patients were treated with Prednisolone during their disease. Disease modifying drugs including Hydroxychloroquine (85.4%), Azathioprine (39.8%), Mycophenolate (36.8%), Cyclophosphamide (23%), Methotrexate (11.8%) were also used in combination. 19.9% of our patients received Rituximab. The majority of patients remain in active follow up (68.1%). The mean follow up is 15.1 years. 14.7% have died, 8.1% moved away (known location), 5% have moved away (unknown location). Cancer was a major cause of death (31.8%), notably of the breast (16.1%) and lung (14.3%) and Non-Hodgkin’s lymphoma (10.7%). The second leading cause of death was infection (30.7%) followed by cardiovascular disease including stroke and myocardial infarction (8%).

Conclusion: Although the outlook for SLE has improved in the past 50 years, it remains a condition with significant morbidity and mortality. The introduction of Rituximab has provided an additional therapeutic strategy beyond conventional immunosuppression but it is not a cure. We await the introduction of more successful biologic therapies to improve the outcome for our patients.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/systemic-lupus-erythematosus-detailed-anatomy-of-a-cohort-follow-up-for-more-than-35-years/