I have been on 5 medications. Avonex, changed due to silent exacerbations, Rebif for 11 yrs, changed due to efficacy no longer working, Tysabri, stop after 2 yrs due to JC virus, Tecfidera, not efficient enough, and Aubagio, stopped due to skin peeling reactions and high blood pressure. Even though my MRI's may show no new lesions, I am losing my balance, and my vision is deteriorating from constant optic neuritis.
I want to try the new medication Lemtrada, because I did the absolute best on Tysabri and I seem to do better on IV medications. However, my neurologist says that I am not sick enough and refuses and says other neurologists will refuse also. Now, I am currently on no medication because the one the neurologist backs (Copaxone) takes 9 months to get into the system and I want a medication that slows down all symptoms not just the lesions on the brain. Is this true about no neurologist prescribing Lemtrada? How can I get this new medication prescribed to me?
First of all it sounds like you have secondary progressive MS, since you describe progressive worsening problems with balance and vision in the absence of relapses or new lesions on MRI. You may be in the early stages of SPMS, but I can not determine this from your description.
There is no evidence that Copaxone is beneficial at this stage of disease and this option would not be appropriate. Tysabri was not beneficial in a recent secondary progressive trial, although people in the early stages often benefit from Tysabri. Lemtrada (alemtuzumba) was not helpful to people with secondary progressive MS but similar to Tysabri may be beneficial in early SPMS patients who continue to experience inflammatory activity (relapses or new MRI lesions in the past year or two at most).
Based on the information provided, the best choice right now would be Rituximab (especially if you are under age 55), but this is often not authorized by insurance as a treatment for MS patients. The second best choice is to restart Tysabri, since you know you responded and tolerated this treatment in the past, and switch to Ocrelizumab when this is approved by the FDA, hopefully by the end of 2016.
The risk of PML is only significant after 24 months of re-treatment with Tysabri even in patients who are JC virus positive and you would be switching to Ocrelizumab before that amount of time on treatment. Your risk of PML is particularly low if your JCV antibody index in less than 1.5.
To determine if Lemtrada is a reasonable option would require me to gather a lot more information about your condition. As mentioned above Lemtrada was not beneficial in prior secondary progressive clinical trials and there are short and long term risks associated with this treatment.
Discuss these options with your MS specialist. Good Luck
Revere (Rip) Kinkel MD
Director of the Multiple Sclerosis Program
Professor of Clinical Neurosciences
University of California San Diego
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