What's Next? Appointment with my MS Specialist

Today I met with my MS specialist and as suspected, she wants me to discontinue Rituxan because of the breakthrough activity. We discussed that I have a history of right hemiparesis, right hemibody sensory changes, right foot drop, and T2 hyperintense lesions. I have had very active MS since diagnosis. After discussing a few medications and treatments such as HSCT or Hematopoietic Stem Cell Transplantation. We discussed Lemtrada but she didn't feel that I should take it due to cancer being in my family. We also discussed Tysabri but due to being JC-positive, I am unwilling to try it due to PML risk. She suggested Mavenclad which she said would reset my immune system kind of like HSCT. She also suggested I look into clinical trials like the BEAT-MS study. She said she thought I would qualify and told me where to apply for the clinical trial. She also said that she wanted me to start Mavenclad once the Rituxan was done on Mid March to early April.

This has been a difficult and overwhelming day. First, I failed a highly effective MS medication which is a huge blow. On the way home I just felt so defeated and numb. I asked about Ocrevus and she told me it was likely that it wouldn't work because Rituxan was the Sister drug and that failed. Ocrevus would work the same way Ritxan does. This really took the wind out of my sails because I know Ocrevus to be at the top of the list of available treatments and that was what I expected she would recommend next. I have never heard of Mavenclad so I have some research to do. I also need to research the BEAT-MS clinical trial.

With these high-efficacy medications comes a higher risk of side effects and even cancer the longer you are on them. I really feel emotionally beat. I guess I am going to have to do HSCT. Right now that is my last resort because I am just about out of options. such a stressful day.

http://www.beat-ms.org/

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