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My JCV index is 3.49. Is this really high?

11/5/2023

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Here is My Question:
I was JCV negative until this month and my index is 3.49. My doctor doesn’t seem as concerned as I am. I am really scared. Isn’t this considered extremely high?

Answer:

A JCV index this high in a person on Tysabri increases the risk of developing PML in the future but should not be a cause for immediate concern. Specifically, this DOES NOT MEAN you have PML or will get PML. It does mean your future risk of PML may be as high as 3 % after 5 years of treatment. This is considered high for most medical or surgical treatments.

There is a specific protocol we follow to mitigate the risk of PML when the JCV index increases to high levels while on treatment.
  1. We get a repeat MRI scan of the brain to make sure there is no evidence of presymptomatic PML. PML can often be detected 6 to 9 months before it becomes symptomatic, and stopping Tysabri before symptoms develop dramatically improves outcomes. Remember, it is exceedingly rare for anyone to develop PML if you have been on treatment for less than 2 years. If there is any question about the presence of presymptomatic PML on the repeat MRI scan, we usually obtain a sample of CSF through a lumbar puncture and send the sample to a lab able to quantitatively detect if there is any of the virus causing PML in the spinal fluid. 
  2. After an MRI is done to exclude asymptomatic PML, we usually make one of the following recommendations. The choice depends on your comfort level and the comfort level of the prescribing, responsible physician. Some MS specialists consider increasing the interval between Tysabri infusions to every 6 weeks because of evidence that this lowers the risk of PML significantly. Whether or not you continue on this type of extended interval dosing with Tysabri depends on a number of factors including age, prior immunsuppression, current duration of Tysabri treatment, current disease type and your absolute JCV index level. I personally tend to switch all people to other types of highly active therapy when their JCV index rises above 0.9, but other MS specialists have their own cut-off (some use a JCV index of 0.6 and others use 0.45). I will also stop Tysabri at lower JCV indexes in some people with MS. For instance, I will stop treatment in any JCV positive patient (regardless of index value) who was previously on immunosupression. 
  3. Remember, anti-CD20 therapy (Rituximab, Ocrevus, Kesimpta and Briumvi) is highly effective at preventing rebound after stopping Tysabri and also highly effective at treating relapsing remitting MS. This is generally our go to treatment in people coming off of Tysabri who need highly active therapy. The RESTORE study demonstrated that IV steroid treatments, interferons and copaxone were not effective at preventing rebound disease activity after stopping Tysabri.

​Revere P (Rip) Kinkel, MDProfessor of Neurosciences
Director of the Multiple Sclerosis Program
University of California San Diego
#MS #multiplesclerosi #JCVindex #Tysabri

​
PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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    PLEASE NOTE: This information/opinions on this site should be used as an information source only.  This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment.  Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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  • About Us
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  • Virtual MS Center
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  • News & Resources
  • Seminar Registration
  • Health & Wellness
  • Blogs
    • Physician Blog >
      • Healthcare Provider Blog
    • Physical Therapy Blog
    • Patient Blog
    • Caregiver Blog
    • Research Blogs >
      • "Ask Dr. Debbie" Research Blog
      • Multiple Perspectives In Multiple Sclerosis Research Blog
  • About MS
    • What is MS?
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    • Depression and Anxiety
    • Dizziness/Vertigo
    • Dysphagia
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    • Foot Drop
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    • Loss of Hand Dexterity and Coordination
    • Memory and Mutliple Sclerosis
    • Migraines
    • Numbness/Tingling/Altered Sensation
    • Nystagmus and Oscillopsia
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