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    Question about JCV titer levels

    my dh has been on tysabri for 8 years and just got a positive jcv test. his neuro told him that titers of 1.0 or higher are positive, and his titers were 1.05. so barely in the positive... but i see people posting that .4 or .5 is positive? why would there be this difference? my dh neuro requiring twice as high of titer compared to you guys. any thoughts much appreciated.

    #2
    Less than .2 is negative, .2 to .4 is considered indeterminate, and anything over .4 is considered positive. However, there are individuals on this website who have much higher levels and remain in Ty because it has such a strong efficacy. I believe there is a blood test some of these individuals take that further clarifies their risk. I hope some of them respond to this thread. In addition, your husband could consider moving his infusions from every four weeks to between six to 8 weeks. The efficacy remains the same and no one on this schedule has ever developed PML. Hope this information helps.

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      #3
      I have heard of .9 (don't know if it is a different scale ?) being considered positive.
      I have been in the intermediate for well over a year and have been on Tysabri since 10/2006. I have been getting my infusions every 8 weeks for over 1 year and before that a few months of every 6 weeks.

      Hope your DH does well!
      Linda

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        #4
        My neuro has given me the same guidelines as ru4cats: < .2 negative, .2 to .4 indeterminate, > .4 positive.

        As far as I know, there is only one lab that provides test, so don't think that lab differences come into play.

        That being said, I have heard that 1.0 is not considered a high positive. Since your husband has been on Ty for 8 years, and is now positive, I do believe the recommendation is to stretch Infusion dates out, as suggested.

        Good luck to your husband. It is great that you are looking out for him.
        Kathy
        DX 01/06, currently on Tysabri

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          #5
          Hi Wallflower,

          You asked for any thoughts so here goes...

          You mentioned your husband was 1.05 and the doctor considered it barely positive. Of course, anything over .4 is positive, however, most doctors view .9 and under as having little more risk than being negative since there have been so few cases of PML below .9

          So my thought is that your doctor considers 1.05 so close to .9 and that number has so little PML risk, he characterized it as negative for PML risk.

          Hope that makes sense!

          God bless you and your loved ones!

          Comment


            #6
            I was 3.4 when I stopped Ty 14 months ago. As I have said on here before, it was a bad decision as I went downhill quickly.

            I just started Ty again, hoping to stabilize like I did before. Your hubby is in good shape to continue.

            Good luck to him.

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              #7
              Myoak,
              thank you so much for explaining .9 . I knew I had heard that it was considered a safe number but, I did not know why


              Tomjadg, I am still hoping for you that Tysabri resumes being a good med for you.
              Please keep us updated !
              Linda

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                #8
                Thanks Linda, I will. Drop me an email if you wish.

                Comment


                  #9
                  JC 4.6 too high to try?

                  My JC was .46 and my Dr doesn't think that's too high to start Tysabri. I'm apprehensive but I've got to get on something. I've only tried Tec and it made me so sick. I guess I'm sensitive........

                  Comment


                    #10
                    Originally posted by Gretelgirl View Post
                    My JC was .46 and my Dr doesn't think that's too high to start Tysabri. I'm apprehensive but I've got to get on something. I've only tried Tec and it made me so sick. I guess I'm sensitive........
                    I'm confused? Are you 4.6 or .46? The former is high, the latter not so much. .46 is considered on the low end of positive, while 4.6 is very high. That being said, I'd trust your neurologist that he is recommending what is in your best interest.

                    I've had 86 infusions, and Tysabri has been very good for me. I have always been negative, but my last test showed me climbing by .5; still negative but getting closer to indeterminate. Other than PML (I know, it's a biggy!), for the vast majority, Tysabri is an easy drug to take. It has one of the strongest efficacies along with Lemtrada, which also has severe possible long term side effects.

                    Right now you want to stop your MS in its tracks, and Tysabri has the strong potential to do that. I don't believe anyone has developed PML in the first 12 months on Tysabri and very few in the first 18.
                    There is a good chance 12 months on Tysabri will stabilize your MS, and 18 months even more so.

                    There are a fair number of Tysabri users in this forum that are strongly positive and still on Ty because they have done so well they are willing to take the rest. Several of these individuals have moved to EID, extended interval dosing, where your infusions are spread from 28 days to 35, then 42, then 49 (see LindaofColorado). I am just beginning this process, but research has shown that this works well with no decrease in efficacy. I believe, there have been, up to this point, no cases of PML in individuals using this technique. You can google EID with Tysabri to read up on this. To allay your concerns, you might want to discuss this with your neurologist.

                    Hope this helps.

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                      #11
                      Sorry typo- 4.6 or .46? .46 is well within safe range.
                      I have been on Ty almost 5 yrs, JC+
                      Have been as high as 2.6 but did ok so continued.
                      Over the last year titer has actually reduced to 1.2 .
                      Neuro did say that some of the reduction could be explained by a small change in the way they do the testing but not all - so good for me.
                      4.6 is high if correct. when was your most recent test?
                      I don't think i would take the risk if it is that high.

                      Comment


                        #12
                        .46 is the right one!

                        Ooops, yes, big difference between the two. My level is .46. Thank you both for the info. My SPMS is changing all of a sudden and it is scaring me to death. If there is any chance of it curbing this progression I have to try it.

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