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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMSTeam Member asked a question 💭
Burrville, CT

My MRI last month showed major changes from my one of 1 1/2 years ago. Back in 2014 I stopped treating for 10 years. Felt so much better. A year and a half ago, my MRI wasn’t good. Started on tecfidera. Also, years ago he wanted to put me on tysabri, and that’s when I my bloodwork showed I was JC+. He didn’t put me on it. Now he wants to change my dm to rutuxan (sp?). It has the PML language in there. I haven’t spoken to my neuro yet because we’re waiting for approval from my insurance. Quite… read more

June 14
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A MyMSTeam Member

They all say that now. But ones like briumvi haven’t had any cases yet. that’s good news.

June 14
A MyMSTeam Member

It' s important to have good communication and relationship with your neurologist, if you don't it's time to find a better fit to address your needs.

June 14
A MyMSTeam Member

Tecfidera say it can cause PML and you were on that, I take it but I’m not JC+…. I would certainly ask questions and if you’re not happy with your neurologist switch to a different one.
Good luck

June 16
MyMSTeam

It's completely understandable to feel nervous, especially when your MRI is showing significant changes and a new medication is being proposed. Those feelings are valid!

Yes, some MyMSTeam members who are JC+ have faced similar decisions about DMTs that carry PML risk. One member shared: "You have to ask yourself: Are the Show Full Answer

It's completely understandable to feel nervous, especially when your MRI is showing significant changes and a new medication is being proposed. Those feelings are valid!

Yes, some MyMSTeam members who are JC+ have faced similar decisions about DMTs that carry PML risk. One member shared: "You have to ask yourself: Are the chances of getting PML small enough that it outweighs the chances I may have another relapse which could cause permanent damage? To me, the answer is a resounding 'Yes!'"

That said, everyone's situation is different. Regarding Rituximab (you spelled it close enough! 😊) — yes, JC virus antibodies have been detected in people taking it, meaning PML risk exists. However, PML risk can be monitored and managed through:

- Regular blood tests to check JC virus antibody levels (typically every 6 months)
- Tracking antibody level changes over time
- Adjusting treatment plans based on those results

The key is that doctors don't just prescribe and disappear — there's ongoing monitoring involved. Regarding concerns about your neurologist — those are serious observations worth addressing. It may be worth considering a second opinion from another MS specialist before committing to a new treatment, especially given your MRI changes and the complexity of your situation.

When you do speak with your neuro, some good questions to ask include:

- What are my current JC antibody levels?
- How often will my levels be monitored on Rituximab?
- Why is Tecfidera no longer sufficient?
- What happens if insurance denies this too?

Trust your instincts — being an informed, active participant in your care really matters.

June 14

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