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    JCV

    How often do we need to get tested for JCV if we are on Tysabri?
    LA dx MS feb 2008
    Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

    #2
    Hello,

    The current recommendation remains at testing every six months, I believe.

    However, some MS centers test more often based data that combined 525 German patients and 711 French patients on Tysabri which demonstrated a conversion rate of almost 10% per year. The German study lasted only 15 months and the French study lasted only 2 years which is shorter than desired by many. In any case, the 10% per year conversion rate is much higher than the general populationís conversion rate of about 1% per year.

    Please keep in mind that no one who is JCV positive has ever gotten PML if they extended the time between infusions to 5, 6, 7, or 8 weeks. That fact tells us when Tysabri is less concentrated the immune system maintains effective surveillance against the JC virus. Everyone on Tysabri who is JCV positive should be getting infusions not every 4 weeks because some of those will get PML. They should be getting infusions every 5, 6, 7, or 8 weeks because NONE of those have gotten PML. Pretty simple, really.

    Therapy with natalizumab is associated with high JCV seroconversion and rising JCV index values

    http://nn.neurology.org/content/3/1/e195

    I was shocked to read that your insurance did not pay for the JCV test when you were on Tysabri previously. Something is wrong somewhere because Biogen pays for that test, not your insurance. You should call Biogen and ask them about it. Also, you could call Quest, the ones who do the JCV test. I recall years ago asking Quest what the cost was and it was over $400 dollars at that time. However, Biogen always paid for it. Always. Every time. I seriously doubt whether that policy has changed.

    Best Wishes!

    Comment


      #3
      Originally posted by Myoak View Post
      Hello,
      I was shocked to read that your insurance did not pay for the JCV test when you were on Tysabri previously. Something is wrong somewhere because Biogen pays for that test, not your insurance. You should call Biogen and ask them about it. Also, you could call Quest, the ones who do the JCV test. I recall years ago asking Quest what the cost was and it was over $400 dollars at that time. However, Biogen always paid for it. Always. Every time. I seriously doubt whether that policy has changed.
      To back up the above, just yesterday I had another JCV test at Quest. They asked for my insurance card and I immediately told them Biogen pays for it. That straightened things out right away - the staff there didn't know about the JCV testing but once told that, they seemed to know exactly where to look to get the information they needed.

      Myoak, the great information you provide bears constant repeating here.

      - R
      All the best, ~G

      Comment


        #4
        Thank you for that information! It must have been the infusion center not billing right for me when they said insurance would not pay. I have not been tested for JCV for a couple of years by the neuro I go to now. I am going to find out why!

        Originally posted by Myoak View Post
        Hello,

        The current recommendation remains at testing every six months, I believe.

        However, some MS centers test more often based data that combined 525 German patients and 711 French patients on Tysabri which demonstrated a conversion rate of almost 10% per year. The German study lasted only 15 months and the French study lasted only 2 years which is shorter than desired by many. In any case, the 10% per year conversion rate is much higher than the general populationís conversion rate of about 1% per year.

        Please keep in mind that no one who is JCV positive has ever gotten PML if they extended the time between infusions to 5, 6, 7, or 8 weeks. That fact tells us when Tysabri is less concentrated the immune system maintains effective surveillance against the JC virus. Everyone on Tysabri who is JCV positive should be getting infusions not every 4 weeks because some of those will get PML. They should be getting infusions every 5, 6, 7, or 8 weeks because NONE of those have gotten PML. Pretty simple, really.

        Therapy with natalizumab is associated with high JCV seroconversion and rising JCV index values

        http://nn.neurology.org/content/3/1/e195

        I was shocked to read that your insurance did not pay for the JCV test when you were on Tysabri previously. Something is wrong somewhere because Biogen pays for that test, not your insurance. You should call Biogen and ask them about it. Also, you could call Quest, the ones who do the JCV test. I recall years ago asking Quest what the cost was and it was over $400 dollars at that time. However, Biogen always paid for it. Always. Every time. I seriously doubt whether that policy has changed.

        Best Wishes!
        LA dx MS feb 2008
        Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

        Comment


          #5
          Thank you!
          Originally posted by gargantua View Post
          To back up the above, just yesterday I had another JCV test at Quest. They asked for my insurance card and I immediately told them Biogen pays for it. That straightened things out right away - the staff there didn't know about the JCV testing but once told that, they seemed to know exactly where to look to get the information they needed.

          Myoak, the great information you provide bears constant repeating here.

          - R
          LA dx MS feb 2008
          Avonex Feb 2008-May 2009, Betaseron July 2009-Oct 2011 -- Tysabri Nov 2012-2014 -- Tecfidera 2014-2015 (allergic reaction) --Copaxone 2015-2016 (could not tolerate the painful itching) -- Tysabri November 2016 - Trying CBD for pain control

          Comment


            #6
            Fast for JC Virus Test?

            Is it necessary to fast for the JC Virus test?

            Comment


              #7
              Originally posted by tinytimsmom View Post
              Is it necessary to fast for the JC Virus test?
              No, you do not have to fast before the JCV test.
              All the best, ~G

              Comment


                #8
                Much appreciated!

                Thank you for the quick response.

                Comment


                  #9
                  Hello,

                  I wanted to chime in here to correct and update my earlier post to say that people on an extended dosing schedule HAVE gotten PML. I do not have current stats, however, I am aware that some people on extended dosing have gotten PML. We know that extended dosing reduces the frequency of PML but does not eliminate it altogether.

                  Perhaps, we will get an update about Tysabri, PML, and related issues from the currently ongoing ECTRIMS conference in Sweden. Over 1600 abstracts dealing with MS research are being presented this week so we may hear something.

                  Best Wishes!

                  Comment


                    #10
                    Originally posted by Myoak View Post
                    Hello,

                    I wanted to chime in here to correct and update my earlier post to say that people on an extended dosing schedule HAVE gotten PML. I do not have current stats, however, I am aware that some people on extended dosing have gotten PML. We know that extended dosing reduces the frequency of PML but does not eliminate it altogether.

                    Perhaps, we will get an update about Tysabri, PML, and related issues from the currently ongoing ECTRIMS conference in Sweden. Over 1600 abstracts dealing with MS research are being presented this week so we may hear something.

                    Best Wishes!
                    Myoak you may have already quoted this study - I just saw a neurologist provide these stats:

                    "The crude PML incidence rate for the whole 2007 to 2016 period was 2.00 (95% CI, 1.46-2.69) per 1000 patient-years" https:/



                    https://www.ncbi.nlm.nih.gov/pubmed/31479149


                    All the best, ~G

                    Comment


                      #11
                      Originally posted by Myoak View Post
                      Perhaps, we will get an update about Tysabri, PML, and related issues from the currently ongoing ECTRIMS conference in Sweden. Over 1600 abstracts dealing with MS research are being presented this week so we may hear something.
                      Best Wishes!
                      I may have borked my last response to you Myoak. On September 2 2019, the results of a study were released, about declining rates of Natalizumab-related PML instances, in France. This is the takeaway stat:

                      "The crude PML incidence rate for the whole 2007 to 2016 period was 2.00 (95% CI, 1.46-2.69) per 1000 patient-years"

                      And Summary:

                      The results of this study suggest, for the first time, a decrease in natalizumab-associated PML incidence since 2013 in France that may be associated with a generalized use of John Cunningham virus serologic test results; this finding appears to support the continuation and reinforcement of educational activities and risk-minimization strategies in the management of disease-modifying therapies for multiple sclerosis.

                      https://www.ncbi.nlm.nih.gov/pubmed/31479149
                      All the best, ~G

                      Comment


                        #12
                        Thank you!

                        For clarity and simplicity I would add that extending time between doses of Tysabri reduces the risk of PML by 88%. Of course, that is a HUGE reduction in the risk of PML compared to standard 4-week dosing.

                        Thankfully, there is a site which stays abreast of current research regarding Tysabri, JCV, and PML and reports on this information at...

                        http://www.clinicspeak.com/understan...sk-on-tysabri/

                        Best wishes!

                        Comment


                          #13
                          Myoak,

                          Have you seen any stats on how people have done if they went from Tysabri to Ocrevus and then back to Tysabri? Just asking...

                          Comment


                            #14
                            Originally posted by ru4cats View Post
                            Myoak,

                            Have you seen any stats on how people have done if they went from Tysabri to Ocrevus and then back to Tysabri? Just asking...
                            Hello Kris,

                            No, I have not seen any stats on that point. However, your question makes me wonder if some neuros aren't almost promising patients that... "if we go ahead and swtich you from Tysabri to Ocrevus and it doesn't work out, we can always switch back."

                            Well, once you switch, if you are JCV+, there will be no going back to Tysabri in most cases IMO, because putting JCV+ patients on Tysabri is rarely done; doing so lies outside standard practice.

                            If a JVC+ person switched to Ocrevus, or became JCV+ while on Ocrevus, IMO, they would have to be experiencing terrible results to even be considered for returning to Tysabri and likely not even then. The treating neuro would want that person to try a different DMT than Tysabri or Ocrevus, IMO. Switching back would be virtually impossible, IMO. The neuro knows that, but he/she won't volunteer it to you, you would have to press to get the full truth, IMO.

                            Best Wishes!!!!!

                            Comment


                              #15
                              The reason I asked is because I know of a person from a FB group that went from Tysabri (quit to have some kiddos) to Ocrevus and will now return to Tysabri at the beginning of next year. I read her post and red flags were flying...JC+ with a high titer, had been on Tysabri for 5 years, and now Ocrevus, an immunosuppressant. She now has three negative checks and is going back. I called this to her attention (as delicately as I could...you've taught me well!), and she did say she will return to a 6 week infusion schedule. I was just trying to see if you had any info. I was surprised her neuro approved her, especially with young kiddos. I just fear for her future. Thanks. Kris

                              Comment

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