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I tested positive for the JC Virus and am terrified of treatments.!

A MyMSTeam Member asked a question 💭
Wixom, MI

I was recently diagnosed with MS and its rapidly advancing at the moment. I have tested positive for the JC Virus, and they said that that there's a chance of developing PML with any immunosuppressants. Has anyone else tested positive for this virus? I am scared to even treat the MS. Any info is appreciated.

January 23, 2023
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A MyMSTeam Member

I took the medication to Sabri for 14 months and I am JCV positive as well. I don't think I have PML but things have progressed on me in the last several years this condition really sucks.

January 24, 2023
A MyMSTeam Member

As I understand, not all medications carry the same risk of developing it, we started testing for it only when I startet taking Tysabry (i was on other treatment before). Also, they told me that if/when i became positive we still have time to safely take meds untill it become a risk. There probably is higher risk of developing most of infection related diseases when your immunity is affected (think of hiv or people after organ transplantation) it's scary reading all possible complications of meds taking but it's important how common they are also. I decided I'll trust my neurologist, I feel safe with her. As far as i know there are therapies with different chances of developing pml even if you are jc positive. Good luck!

January 23, 2023
MyMSTeam

Testing positive for the JC virus can indeed be concerning, especially when considering treatments for multiple sclerosis (MS). Here are some key points from the knowledge base that might help:

- Monitoring: Doctors often recommend regular blood tests to monitor JC virus antibody levels, especially if you're on Show Full Answer

Testing positive for the JC virus can indeed be concerning, especially when considering treatments for multiple sclerosis (MS). Here are some key points from the knowledge base that might help:

- Monitoring: Doctors often recommend regular blood tests to monitor JC virus antibody levels, especially if you're on immune-suppressing drugs. This helps in assessing the risk of developing PML (Progressive Multifocal Leukoencephalopathy).

- Treatment Options: While natalizumab (Tysabri) is associated with a higher risk of PML, other medications like dimethyl fumarate (Tecfidera), fingolimod (Gilenya), and rituximab (Rituxan) also carry some risk. However, there are many treatment options available today, and your doctor can help you find the best one for your situation.

- Doctor's Advice: Always consult your doctor before making any changes to your medication. They can provide personalized advice based on your medical history and current condition.

- Community Support: Many people with MS share their experiences and support each other. Engaging with a community can provide emotional support and practical advice.

Remember, your healthcare team is there to help you navigate these decisions and ensure the best possible outcome for your health.

July 16, 2024
A MyMSTeam Member

Thank you for the comment. I appreciate it. I have spoken with my MS Specialist and she explained that all DMTs carry a possibility of PML with JC but some are worse than others. She also explained they closely monitor. I just got diagnosed recently and feel uneasy about any medicine. Have a great night.

January 26, 2023
A MyMSTeam Member

1 step at a time, do not be scared, lots of folks here are jc +. Having this knowledge simply eliminates what not to do. There are many dmts that do not cause pml . Catch your breath. I've mentioned this this through various posts.

January 26, 2023

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