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New Test Available: Mitigating Risks with Tysabri Video from CMSC Annual Meeting

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    New Test Available: Mitigating Risks with Tysabri Video from CMSC Annual Meeting

    This video, Mitigating Risks with Tysabri, from our recent coverage of the CMSC Annual Meeting is very informative.y

    Dr. Hunter and Dr. Kantor explain the new JCV "index titer" test well. (See video above and link near the bottom of this post).

    I especially appreciated Dr. Kantor's summary, starting at time code 3:41 of the video above. He explains the new test (Jan. 2013) and what to ask your doctor to get the test done.

    As soon as I saw the video above, I asked my Neuro for this blood test that measures Titers. Within a day I took the lab test, and two days later the PA from my Neuro's office called with my results.

    No need to mention my results. For me it was great that I watched the video and asked my Neuro for this test.

    If I hadn't seen this video, I might not have become aware of this new test for many months.

    Great that the conference coverage is making information available at about the same time it is released to Health Care Professionals!


    If you are on Tysabri, please watch the video. You might want to ask your Neuro about this.

    Also, here is a related thread that is a very informative discussion about
    Results of blood work for JCV 'index" risk

    Hope all this helps! Please feel free to comment!

    Alan

    Last edited by alanpgh; 02-25-2017, 02:22 AM.

    #2
    Thank you, Alan.

    I was finally able to view this video by using Java on my MacBook. Thanks again!

    Comment


      #3
      Anything new with anyone on this test?

      Comment


        #4
        Familiar with this test

        I'm familiar with this, because my doctor uses this method. Unfortunately, it means I have to "take a break" from Tysabri, because my titers are high.

        I'm sad about having to go off TYS, but this is good information.

        Comment


          #5
          I'm not understanding the video. I know about "titers". Mine is 1.73.

          I thought I heard them mention that there is now an "index" that can help narrow down who is at the most risk.

          Did I miss something? Thanks.

          Comment


            #6
            Golfore,

            I'm not a doctor, but my understanding is that the higher the "Titer" number, the higher the probability of a risk. Ask your Neuro for an explanation with regard to your situation.

            I just wanted to share my experience here:
            My titer number was quite high. My Neuro, who is an MS Specialist with over 1200 patients, suggested I have a Lumbar Puncture (LP). He assured me he would use a small needle and the side effects from the LP would be minimal. I agreed, and he did the LP, and I had no side effects. (This was the first time I had ever had a Lumbar Puncture.)

            My Neuro told me that the results of the Lumbar Puncture were such that he recommended I stay on Tysabri; so I am still on Tysabri. I have been stable in terms of symptoms with minimal progression while on Tysabri.

            I'm just trying to say that, for me, there was a step following a fairly high "Titer" index number. That step was a Lumbar Puncture to look at the spinal fluid.

            I went with my Neuro's recommendation because of his depth of experience. It was the best course for me at the time.

            He said he will test again in the future to determine what is best at that time.

            To me, MS is a moving target, so my goal is to be on the best treatment for me at any given time. I am lucky yo have access to a very experienced MS Specialist for over 12 years.

            Everyone is different. Consult your health care team for your specific situation. And, remember, we all have the right to a second opinion.

            Best Wishes for a Happy and Healthy New Year!

            Time

            Comment


              #7
              TIME, Thanks for the information. If you look at the video again, Dr Samuel Hunter says at about the 2:00 min. mark, that there is a new way that risk is being labeled. I think he says it is called an "index" that replaces the older "titer" number.

              Maybe I heard it wrong. I'm looking for new information, not titer.

              I also have an MS specialist. Even the best Dr. can make mistakes.

              I've had spinal taps. I will talk to him during my next office visit. Thank you for the information.

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