Highly active multiple sclerosis (HAMS) is a clinical phenotype defined by recent disease activity and determines the indication for disease modifying treatments (DMTs). However, prognosis of HAMS is unknown in terms of progression rates.
HAMS subjects were recruited to research cohort in 2010. Audits were performed in 2015 and 2019. Progression was assessed according to EDSS criteria by treating clinicians.
128/200 subjects had data at all timepoints. Mean age at baseline was 39.5yrs, disease duration 6.6yrs and entry EDSS was 3.3; 80.4% female. Mean relapse number in the year prior to recruitment was 1.9 and 30.5% had gadolinium enhancing lesions. 33% had not received DMTs at baseline and by 33 months 5% were still off DMTs.
At 33 months follow-up 17.2% had progressed and 33% by 81 months. However, of those progressing at 33 months 23% of this group had not progressed further or improved by 81 months. There was no difference in progression rates at 81 months in those on DMTs (29/86) at baseline and continued and those who were not (13/42).
In HAMS 32.8% had progressed by 6.75 years. Using EDSS progression as an outcome in this cohort, earlier treatment with the DMTs did not appear to affect prognosis.
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