Janet, 58, currently works full-time running an animal grooming business. She is married with two adult children. She was diagnosed in 1997 with RRMS after presenting with two mild relapses. MRI at that time revealed a low T2 burden of disease. She was initially hesitant about starting treatment. In 2003, she initiated therapy with interferon-beta-1b after experiencing a moderately-severe relapse with some residual disability. EDSS was 1.5.
Between 2003 and 2015, Janet had three relapses with no accumulation of disability. An MRI in 2012 revealed two new lesions. In 2016, Janet reported that she was tired of self-injecting and was switched to dimethyl fumarate. She has been relapse-free for the past five years. An MRI in 2019 showed two new lesions but MRI has been stable ever since. EDSS has been stable for five years; in November 2022, EDSS score was 2.5 (motor 2, cerebellar 2).
The survey is now closed. We received 34 responses. See below for a summary of the answers you provided.
Question 1: Do you agree that there is no evidence of progression?
The largest group of responders (44%) said that there was no evidence of progression because the EDSS score (2.5) is still very low. Another group said Janet was not progressing because her EDSS score has changed only 1 point over the past 19 years. 24% were unsure and said they would need to investigate functional system changes. 14% said that Janet was progressing even though her EDSS has been stable for five years.
Question 2: Would you diagnose Janet with SPMS?
One-third of respondents (35%) said Janet has not developed SPMS because she has minimal disability worsening or her EDSS is <3.0. However, 18% would diagnose SPMS since Janet has been living with MS for 25 years, or her progression is independent of disease activity. Almost one-half of respondents (47%) said they were unsure; she would need a more complete picture of Janet’s function and cognition.
Question 3: Would you consider changing Janet’s treatment regimen?
One-half (50%) of respondents said Janet’s disease is stable so they would not change the regimen. Another 29% would continue the regimen because it is being well tolerated. In contrast, 21% said they would change the regimen, with some opting for siponimod for SPMS, some opting to de-escalate to a drug with a better safety profile, and some stopping treatment because of Janet’s age and disease stability.
Question 4: Would Janet be a candidate for discontinuing treatment?
Most respondents (53%) would not stop treatment because of recent MRI activity. 41% would consider discontinuing treatment if Janet wanted to stop, and 3% said it would depend on the lymphocyte count. Only 3% would stop treatment because the risks of treatment outweigh the benefits in patients aged >55 years.
Question 5: What are your criteria for treatment discontinuation?
The most common criteria were age >55 years and stable disease >5 years (50% of respondents). Another 14% said either age >60 years or stable disease >5 years would be sufficient. 23% said the criteria for stopping would depend on the disease-modifying therapy that the patient was currently using.