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A MyMSTeam Member asked a question 💭
Montgomery, IL
September 5, 2025
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A MyMSTeam Member

Thank you I've been on Gilenya for over 11 years and never heard of P ML being associated with this. My neurologist wants to change my meds to ocrevous Which does have association with p ML And I do not want to take that chance I am currently having a flare up and And know that I need an infusion of steroids but he will not listen to me and is refusing the steroids. I I have had steroids in the past but that was with different neurologists he will not listen and prescribe a steroid treatment and wants me to change meds instead. I no longer trust my neurologist due to the fact that he will not listen to my concerns and what I need to deal with my current flare up he's pushing for ocrevous Which I don't trust I feel he is no longer looking into my best interest and locking into Getting a new neurologist that will listen to my needs to get better.

September 5, 2025
A MyMSTeam Member

I haven't heard specifically what the chances are, but like the AI response said, it has to do with the levels of JC virus antibodies in you (if you even have any). If you are not JC positive, your chances of getting PML are virtually zero. But, you should be tested for it (JCV) every few months to see if you have contracted the virus because that is always a possibility. Be an advocate for yourself! I just went on Kesimpta and my neurologist told me that I didn't need to have the JC antibodies checked and I told her "yes I do". If I am going on something that can cause PML, I will have that checked every 3 to 6 months. There is a certain level of antibodies they want you to stay under to keep from getting PML. (I don't know what that is. I am JC negative, thankfully).

September 5, 2025
A MyMSTeam Member

Tecfidera has had 11 cases of PML as well. And Vulmerity can cause PML and only 1 fatal case I believe. Ocrevus too. Rare but possible.

September 18, 2025
A MyMSTeam Member

Ed. I fully understand. I get final say until they fully explain. I need to change Neurologist.

September 8, 2025
A MyMSTeam Member

The Neuro is Right , If you are wanting steroids then the gilenya is failing you, CHANGE meds , BE PROACTIVE , applaud you Neuro , Why do you think he is wrong? On a side note , on my most neuros are assholes comment, they are some seriously intelligent people , just lack people skills.

September 8, 2025

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