Here is My Question:
I’ve been stable on Copaxone since my diagnosis about 5 years ago, my latest MRI a few weeks ago showed 2 new lesions. I then changed doctors after finding a practice that seems to treat the whole person and not just the condition, and as this has ramped up my anxiety it seems to be more of the type of care I need. This new doctor is a big believer in Tysabri extended interval dosing and seems to have much success with it (several hundred patients, majority 8+years, many with high JCV titers) and feels this would be the beet route, with Vumerity as a second option but not nearly as favored.
Since my diagnosis, from what I’ve read online in my panic-googling moments, Tysabri has always felt like the scariest option and when he named it my heart sank. Due to Covid vaccine concerns, he doesn’t suggest now is the time for Ocrevus or Kesimpta, which is what I was leaning towards.
I am JCV+ with a titer of 2.8 (when tested 4 years ago) and I’m terrified of PML. The new Dr, and again my panic-googling, show that the EID of Tysabri significantly reduces the risk, and the doctor said they would do bloodwork and MRIs every 3 months along with me reporting any issues as soon as I notice them. Does this then keep me in a safe place for moving forward with Tysabri or should I require more monitoring, or a different med altogether. So many have a PML risk.
It seems to be a very effective med to help freeze any progression and maintain my quality of life. The studies I’ve read all seem to show greater increase risk if staying on the med for more than 2 years, and it seems to me it’s difficult to safely switch to another effective DMT after this one without triggering progression.
I just don’t know how to know what’s best to make these decisions, any insight is greatly appreciated!
So much information can be overwhelming to anyone, so let's take apart your question and answer it logically.
Revere P (Rip) Kinkel, MDProfessor of Clinical Neurosciences
Director of the Multiple Sclerosis Program
Clinical Neurosciences Director
University of California San Diego
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