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Results of blood work for JCV 'index" risk

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    #76
    A 3 month washout period is too long according to yet another study; a fact to consider when stopping Tysabri to begin Gilenya.

    The study below looked at serum concentrations and found the lower the concentration of Tysabri the more likely MS will rebound. The longer you wait after stopping Ty the lower will be your concentration of TY and the greater risk of disease activity, according to this study.

    Gilenya takes about two months to become effective. Waiting 3 months after discontinuing Tysabri before starting Gilenya, plus the two months before Gilenya becomes effective allows a considerable window of time for MS to rebound. The lesson from this study and the two linked in the preceding post is clear: begin Gilenya as soon as possible after stopping Tysabri to minimize the opportunity for MS to rebound.

    Natalizumab saturation: biomarker for individual treatment holiday after natalizumab withdrawal?
    http://www.ncbi.nlm.nih.gov/pubmed/24032536

    Missykay, I hope your doctor is paying attention to these recently published studies. If not, talk to him about them by printing the abstracts and taking to your next appointment. I'm sure he will be happy to discuss these concerns. Best to you.

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      #77
      I hope the mods will allow me to post similarly in two different threads. I feel the this particular post is important enough that those taking Tysabri will not want to miss it, and this has been a well-read thread.

      PML risk on Tysabri may be decreased by extending time between doses according to reports from the AAN meeting last month. A retrospective study of 586 people on Tysabri found no cases of PML in those taking TY every 6-8 weeks instead of every 4 weeks.

      One theory about finding no cases of PML in those extending dose is that as Tysabri wears off with time it allows improvement of immune surveillance to occur between doses.

      In July of 2013 this topic was discussed in this thread. At that time I posted a link to: Low weight may contribute to risk for natalizumab-induced PML
      http://www.clinicalneurologynews.com...duced-pml.html.
      Quote from the article by Dr. Foley: “For now, "how we are approaching this is [by] dose-extending high-risk, JC virus antibody–positive populations out to 5-6 weeks, instead of dosing every 4 weeks," as the natalizumab label indicates. It "reduces concentrations in the last few weeks, and saturations decline. It may well be a viable approach for PML risk reduction.”

      It looks as though Dr. Foley was correct. Think about it… zero cases of PML in every case of dose extension studied, 586 total!

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        #78
        Hi Myoak ~ this url doesn't work, so would you mind trying it again? Same thing with the other post you wrote today

        Thanks!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #79
          Thanks Seasha,

          Here is a link which will work, I'm sure: http://www.ms-uk.org/tysabri

          Scroll down 17 headings to: Low body weight linked to PML risk with natalizumab in MS.

          The UK site has a lot of information and no one should be unduly alarmed about bits and pieces of it. Sometimes takes a composite to get a clear perspective so be careful of grabbing singular details.

          Whatever provokes thought and discussion will be a good thing in the long run. That's the way we all learn.

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            #80
            neuro visit

            Hi all,
            I had my 6mth visit with my neuro yesterday-RMmsC. We discussed the low weight and going for 6 weeks instead of 4 weeks. He, of course, knew all about the AAN (Dr Foley) info-doesnt' think there is enough info on both, but was willing to let me go every 6 weeks (my choice). He wants me to have a MRI every 6 months instead of yearly. My jcv #s are .23 to .28 -these #s and being on Ty over 5yrs (doesn't have longer on Ty info-I'm almost 8 yrs) he told me the odds are 1/2500.

            He, also, told me the IGM bands (large antibodies) decrease odds of pml,BUT mean worse ms if you have them

            Thank you to all on msworld and especially myoak for helping me be educated on this dis-ease !!
            Linda

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              #81
              Well, I just went to 8 weeks between infusions. My JCV numbers just went up a bit(I'm in the +3.5 range) so, I figured it was a good time to do it after 35 infusions.

              Last month was 4 years since my DX, with a steady decline and no RR. I am sure I am PP, so not sure it helos.

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                #82
                Has Biogen ever considered lowering the dosage?

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                  #83
                  Anyone with High Titer# and Still on Tysabri?

                  Do any of you have a high Titer index number, but still on Tysabri?

                  Some Neuros with many (1000+) MS patients do Lumber Puncture to make sure no evidence of PML; and of course taking MRi's often and monitoring closely. Then, they decide whether to recommend whether to stay on Tysabri or switch to another DMT.

                  Everyone, what are your experiences?

                  Thanks,
                  Time

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