Amanda, 31, a computer programmer was diagnosed with RRMS in 2014. She was initially treated with glatiramer acetate, but experienced ongoing disease activity. She was switched to fingolimod in 2016 and was clinically and radiologically stable for three years.
A brain MRI in 2019 revealed three new lesions, including one Gd+ lesion. Her EDSS score was 1.5 (vision 1, sensory 1). Amanda reported no relapses or worsening symptoms, so she opted to remain on fingolimod.
An MRI scheduled for 2020 was not obtained because of the COVID-19 pandemic. When an MRI brain was performed in November 2021, there were three new lesions. A change in treatment was discussed, but Amanda said she did not want to change her regimen because she was getting married in the spring.
In December 2022, Amanda complained of worsening symptoms despite adhering to her daily fingolimod treatment regimen. She said she was having difficulties walking, felt clumsy and uncoordinated. Her work performance had worsened over the past few months which she attributed to vision problems and difficulties concentrating. EDSS score was 2.5 (brainstem 2, cerebellar 2, vision 1, sensory 1, cerebral 1). An MRI brain showed two enhancing lesions.
The survey is now closed. We received 33 responses. See below for a summary of the answers you provided.
Question 1: What finding is most worrisome to you?
Most respondents (49%) said that EDSS worsening in a younger patient was most worrisome. Also a concern were the presence of enhancing lesions (21%) and brainstem symptoms (15%). A smaller group found early cognitive impairment (9%) and cerebellar symptoms (6%) to be most worrisome.
Question 2: What disease-modifying therapy would you recommend for Amanda?
A majority (70%) opted for an anti-CD20 agent (ocrelizumab 54%, ofatumumab 16%). The other preferred options were natalizumab (18%) and oral cladribine (9%). Few people selected DMF (3%). No one chose the option of remaining on fingolimod.
Question 3: Amanda expresses concerns about her risk of developing severe COVID-19. Would this influence your preferred treatment choice?
A majority (76%) said that COVID risk would not influence the treatment choice; 61% said they would first confirm her vaccinations were up-to-date, and 15% said their primary concern was treating MS. The remainder said they would avoid anti-CD20 agents (18%) or any chronic immunosuppression (6%).
Question 4: Amanda says she would like to become pregnant later this year. In this scenario, which treatments would you avoid initiating?
The DMTs that the largest proportion of respondents would avoid were fingolimod (28%) and cladribine (25%). Some would avoid natalizumab (17%) and DMF (15%). Few people would avoid ocrelizumab (6%) or ofatumumab (9%) in this scenario.
Question 5: If Amanda were planning a pregnancy in 12-18 months from now, which DMT would you recommend?
Given more time to initiate a longer-acting therapy prior to pregnancy, the preferred options were ocrelizumab (33%), cladribine (30%) and ofatumumab (22%). 15% voted for natalizumab. No respondents voted for DMF.
Question 6: In your view, is Amanda at high risk of postpartum relapse?
A majority (61%) said that Amanda was at risk of postpartum relapse because she had breakthrough disease activity while on treatment (46%) or because her MS has recently worsened (15%). However, many were unsure of the relapse risk (36%) because they said it would depend on whether the treatment switch was effective in controlling her disease. In addition, 3% said the relapse risk was low but the risk of significant deficits was high if one occurred.