I was diagnosed in December 2014 and have had a rough road. In April or May 2015 it took a turn for the the worse. I became disabled in a wheelchair. They put me on Tysabri in June 2015 and I am up walking again but walking like a drunk. I have the JC virus and my levels have been under one but now it is at 1.6. What levels of the JC virus should I stop and consider another drug? I am so nervous if I have to change because I don't want to go back down the same road as before. I go back to the doctor next week. Just wanted some opinions.
You are in a relatively high risk group for the development of PML (1 in 100 or 1 percent) if you remain on Tysabri infused every 28 days. Your best options are as follows:
1. Switch to every 56 day tysabri infusions (every 2 months and no sooner no matter what) with non contrast MRI monitoring every 4 months that includes FLAIR and DWI trace images to detect presymptomatic PML. There is evidence that this protocol significantly decreases the risk of developing PML and maintains control of your MS.
2. Switch to Rituximab or Ocrelizumab. Both are highly effective and capable of preventing a rebound, severe relapse after stopping Tysabri.
3. Switch to Lemtrada, another highly active therapy if you do not have risk factors for this treatment.
Good luck to you. Pass along these ideas to your MD for his or her thoughts.
Revere (Rip) Kinkel MD
Professor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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