I started on Rituxan in 2017 and had two infusions, I then changed over to Ocrevus in 2019 and have had a total of four infusions. In looking back it is evident that clinically, I have declined the last few years. I have also seen on several different forums that some people tend to decline when on Ocrevus. (Specially walking ability among other symptoms) My question is this, in your experience, do you see this decline in some of your patients? My MRIs look good as far as no new lesions and no evident disease activity but I just do not feel well. Walking difficulties, more and more pins and needles feeling all over my body, etc.
I am thinking that this last infusion I just had a couple of weeks ago will be my last.
I’m sorry to hear of your struggles. To answer your question, yes, patients can progressively worsen even on the best therapies available. In the case of b-cell biologics like Ocrevus, they have shown the ability to *slow down* the rate of progression in MS. Unfortunately we do not have a therapy that has proven to stop progression altogether in a clinical trial setting (of course some cases of MS may stop progressing by themselves, but that is not universally experienced). Before deciding to come off therapy altogether, you may want to review your trend of progression with your current neurologist and together made a judgement if the rate of worsening over time is at a slower rate than what would be expected not on therapy or otherwise. As you know, I tend to collect a lot of measurements when I see my patients in clinic (typically a really good exam once a year minimum). Your new neurologist could compare my recorded metrics I found with you and repeat the tests for a comparison to help you in your decision.
A. Scott Nielsen MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
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