Here is My Question:
I’m a 60 yr. old female diagnosed with MS in 2018 after approximately 14 years of symptoms. Doctor thinks I may be secondary progressive or moving into it. Over 20 brain lesions, 3 on spine. Aubagio helped my symptoms but raised my blood pressure. Now doctor suggests Ocrevus but I’m afraid of the risks at my age. I should add I also have Cardiomyopathy and possible afib. Had a relapse a few months ago which doctor isn’t convinced was a relapse (but I know it was). Symptoms: a severe headache 24/7 for 3 weeks; increased balance issues and foot drop, blurry, double vision and a new symptom: sharp stabbing pains in joints and upper arm that came and went. Had what I believe was a relapse last year too. However, an MRI done without contrast recently (to check for a possible TIA I had) showed nothing new. It took a few months for me to get back to my baseline but it does seem at times like I may have slightly progressed since the relapse happened and since I was taken off Aubagio. My question is: Does it sound like I had a relapse to you, and do you think it would be worth the risk for me to try Ocrevus? Doctor is offering nothing else. I’m worried about not being on a DMT, but worried about the risks of Ocrevus too. Don’t know what to do!
The definition of a confirmed relapse of MS includes the following elements:
1. New or worsening neurologic function for >24 hours
2. In the absence of fever or infection
3. Confirmed by an examining neurologist
Much of what you mentioned appear to be symptoms you have had before. Fluctuating symptoms of MS are very common in comparison to actual new inflammatory events (or confirmed relapses). This is due to prior damage and scarring in those pathways which have an opportunity to influence nerve signaling at any point of time (regardless of the presence or absence of discrete inflammatory events). Since the MRIs didn't show anything new, it does raise the question if what you've been experiencing and interpreting as a new relapse may in actuality have been fluctuating symptoms from prior scarring. However, I cannot say and would have to defer to your treating (and examining) neurologist.
In regards to disease modifying therapy and Ocrevus (which is a b-cell biologic), if you are in fact transitioning into a secondary progressive phase, this medicine does have significant advantages. B-cell biologics have show the ability to mitigate the rate of disability progression while other MS therapies have not. Also, these therapies are targeted (ie, they only influence the b-cell rather than taking a shot-gun approach to the entire immune system). In some respects, this lowers risk, particularly infection risk which has been a problem with other highly effective MS therapies that are not targeted.
My experience with b-cell biologics has been favorable in the setting of disease control, tolerance of the medicine among patients, and infectious complications. However, this is a conversation that should be had with your treating neurologist who knows your case of MS and should be able to address any concerns you have about the proposed medicine. If you don't get the answers you are seeking, you may want to get another opinion from a neuro-immunologist that can see you in person, review your history in detail, and make recommendations for you to consider.
Hope that helps.
A. Scott Nielsen, MD MMSc
Neurologist and MS Specialist at Kaiser Permanente
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