Last week my blood test showed a positive for the JC VIRUS. I was on Tysabri for 2 years but haven’t been on it now since 2017. I started Ocrevus in the fall of 2019 and have had 2 treatments with the 3rd one to be given in September. Wondering if any one else has gotten a positive JC VIRUS and what was done? My neurologist has scheduled an MRI for this week and said after she sees those results will decide how to proceed.
Hi! I am JCV positive. I was taking Tecfidera for about 3 years. My white and lymphocyte counts kept dropping too low, I’d stop meds for a bit, they’d come back up, and drop again. My neuro said I could potentially stay on Tecfidera if I was JCV negative but wanted to take me off if I was positive. I believe the reason is that there is a greater risk for developing PML if you are JCV positive. I switched to Plegridy in March. It’s been fine aside from injection site red patches that last for a few weeks.
I was told Tysabri was not an option due to positivity. I chose Gilenya and now take Retuximab. Ocrevus is super similar, if not the same drug re-patented. There's nothing to do. It is what it is and by what I read, its a virus you are exposed to as early as childhood. It remains dormant for awhile. It scared me alot..but now after 3 yrs, I rarely think of it.
I'm inclined to ask your doctor what your risks are for continuing treatment whether it was Tsysabri or Ocrevus. I think I opened a conversation with my then neuro but was never given a final answer. I've read how the virus caused death on some patients but the ones I read about were in Europe and had other medical issues other than MS. I'm not arguing with science but I am just curious.
A positive JC virus test result can be concerning, especially for those with multiple sclerosis (MS). Here are some key points from the knowledge base:
- JC Virus and MS: The JC virus is common, and most people have been exposed to it. However, it can become problematic if the immune system is compromised, such as when Show Full Answer