My daughter is 16 and was diagnosed just over 2 years ago. She is currently on Tysabri infusions because all the other drugs have not worked for her. New MRI's every 6 months reveal increase in size and number a lesions. Right now they figure she has about 30, all in the brain. She is JC positive and that freaks us out. She was just told to pick between Ocrevus & Lemtrada because she is experiencing a lot of fatigue and flushing after the infusion. It drains her and we know that is not typical. We've been told to choose and if you can help it would be very much appreciated. Thank you.
It is very hard to answer your question without knowing all the details of your daughter’s situation. I certainly can help you think through the process.
First, you are correct about her JC + status being a concern, but this is mostly a concern in those people with antibody index values over 1.0 who have been on Tysabri over 2 years so do not fret.
Second, Ocrevus and Lemtrada are both great treatments for MS but have not been compared to each other so we can not determine the relative advantages or disadvantages of each. It is true that Lemtrada requires more monitoring and there is a risk of her developing autoimmune conditions (usually autoimmune thyroid disease), but she is young and if she is as healthy as most 16 year olds will do well with this treatment.
If she is TPO positive (Thyroid peroxidase antibodies), you may be inclined to favor Ocrevus since she would be at increased risk for autoimmune thyroid disease after treatment with Lemtrada. These are all issues to discuss with her MS specialist.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego