Started Gilenya two months ago after discontinuing Tysabri after 5 years. Just developed new symptoms of speech impairment (dysarthria) and reported it to neuro.
MRI two day later interpreted to reveal numerous active new lesions, confirming cause to believe presence of relapse. Neuro's response:
1. Continue Gilenya.
2. Report for 3-day infusion steroids followed by oral taper.
3. Monitor symptoms for approximately six months to see if symptoms continue, improve, or new symptoms develop. Schedule follow-up MRI if symptoms do not abate or new symptoms develop.
4. Obtain JC virus titer.
I am in agreement with this treatment decision.
Nevertheless, Neuro's secretary explained it is not considered a Gilenya fail since I've only been on it for two months, and it might be residual activity from going off Tysabri. I am not sure if I agree with this hypothesis because I did not have these symptoms post-Tysabri, nor while taking the steroids prescribed post-Tysabri to prevent Immune Reconstitution Inflammatory Syndrome.
Anyone post-Tysabri and on Gilenya, I am reading about reactivation of MS progression in patients such as myself, manifesting in much higher new lesion load in the year following discontinuing Tysabri. Thoughts?
MRI two day later interpreted to reveal numerous active new lesions, confirming cause to believe presence of relapse. Neuro's response:
1. Continue Gilenya.
2. Report for 3-day infusion steroids followed by oral taper.
3. Monitor symptoms for approximately six months to see if symptoms continue, improve, or new symptoms develop. Schedule follow-up MRI if symptoms do not abate or new symptoms develop.
4. Obtain JC virus titer.
I am in agreement with this treatment decision.
Nevertheless, Neuro's secretary explained it is not considered a Gilenya fail since I've only been on it for two months, and it might be residual activity from going off Tysabri. I am not sure if I agree with this hypothesis because I did not have these symptoms post-Tysabri, nor while taking the steroids prescribed post-Tysabri to prevent Immune Reconstitution Inflammatory Syndrome.
Anyone post-Tysabri and on Gilenya, I am reading about reactivation of MS progression in patients such as myself, manifesting in much higher new lesion load in the year following discontinuing Tysabri. Thoughts?
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