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Results of blood work for JCV 'index" risk

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    #16
    Myoak,

    Thank you so much for your reply. I was going to ask to be retested at my next visit, which is next month, mainly just to double check that I am positive. But, I definitely will ask for a repeat now and ask for copies of both test. I asked for a copy of the first test and she forgot to give it to me. I do not know my numbers from that first one.

    I have zero side affects from Tysabri. After paying thousands of dollars for it, I now am on the assistance program and my MS has stopped progressing and many symptoms are gone for good. I just see no reason to stop because of something that may or may not happen down the road. To a point. And I sure haven't reached that point yet. Maybe having more information on just what these numbers on the test will mean will help me and others down the road.

    Please continue to share any information you get on this. My doctor is a poor source for this information.

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      #17
      My neuro had an interesting explanation for why the apparent side effects of Tecfidera seem to be worse in use now in the general population than in the clinical trials. He said the flushing and GI symptoms are so obvious that during the trials it was very clear who got the drug v. placebo.

      Since a lot of people in the trial really want the drug (either they have failed on other drugs and this is their last hope or they are uncomfortable with the notion of placebo or they hope this will be better than anything else because it's new) a lot of people just sucked it up with the side effects and did not quit the trials. So the drop out rates of people actually on the drug and so called "tolerability" of the drug which the pharmaceutical company touts is not totally accurate. In short, it looks a lot better in clinical trials because you have slightly more desperate people who hang on longer and put up with the side effects.

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        #18
        Thanks for posting your doctor’s viewpoint, Remy, it was interesting. Another thing to keep in mind is that there is a certain degree of cherry-picking going on when trial participants are screened and chosen. There are likely several reasons why more side effects are reported in a general population of patients than in trials and your doctor’s rational is a legitimate one, IMO.

        LL60, just a reminder… The link below mentions the assay index titer cut points as follows:
        <.20 Negative (JCV-)
        .20 to .40 Indeterminate
        >.40 Positive (JCV+)
        http://www.sciencedirect.com/science...86653213000425

        So you can see how a person might vacillate between testing plus or minus. So far, people on this board have reported their number between 1.81 and 4.9. It would be interesting to hear from more and how their # guides treatment decisions, in the few who are willing to share about it.

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          #19
          Thank you posters
          I, thank G-d, am jcv- My last test was a couple months ago (maybe 3 ?). I do not know if it was the new test so I didn't know to ask about titers-I certainly will the next one, hoping for <.2 . My neuro and his staff at the RMmsC are great sharing info BUT, I usually need to ask.
          Thanks again .. so informative!!
          Linda

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            #20
            Congrats, Lindain, I've had half the infusions you've had, and I've had 4 blood tests, all JC-! I guess I'll check with my neuro on titer level at my next appt. Are they checking titer levels automatically now?

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              #21
              Although I tested positive a few years ago, they just tested me with the new index, and I was negative.
              My nurse had them fax a copy to me. Good news for a change.

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                #22
                The devil you know

                When my doc initially proposed changing to a med other than Ty, my initial reaction was passive, not quite a foregone conclusion that I would stop Ty, but close.

                It was an unusual office visit to begin with, I initiated a sort of show down with my neuro over sx meds. It was a small victory, I left with my sx rx and distracted. I wasn't focused on the implications involved in stopping Ty or those associated with starting a New DMT.

                Now that I've had more time to consider my options, understand that my titer is not alarmingly high, I'm not convenienced that another med will be as effective as Ty, or that another med will have lower risk, at best just different risk. I'm also concerned about tolerence and side effects of of new DMT.

                Also, I've had meaningful improvement for the first time since starting DMTs, and I've tolerated Ty very well, with minimal side effects, my PML+ status aside.

                One of the improvements I had with Ty was bowel incontinence that resolved within 3 mos of starting Ty, after a decade of incontenience. The gastro risk associated with Tefidra? is close to a deal breaker.

                Ty rebound I experienced was significient. Rebound wasn't mentioned when I started Ty, and I wasn't prepared for the news that my recent progression was related to stopping Ty. I stopped Ty for reasons unrelated to the med, but financial.

                When I started Ty, it was a decision based on the fact that I wasn't sure I was willing to continue another 10yrs like the previous 10, primarily based on diminished quality of life issues, the culmulative effect of slow progression over 10yr was weighing on me at the time. I was willing to take the risk with Ty for some promise of improvement, and I got more improvement than I bargined for. For now anyway.

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                  #23
                  Thanks ru4cats (yes I am, his name is Thomas )

                  Congrats Tomjadg I know what a good feeling that is and I'm happy for you

                  MSW1963, I am sorry you had to give up Ty for financial reasons. Did you try to get Biogen to help you ?
                  Linda

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                    #24
                    I've been back on Ty for +1yr with financial assistance program. There was a staffing problem at my neuro's office when I started Ty +2yrs ago. I got lost in the transition between the old coordinator and the new one.

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                      #25
                      myoak,

                      I tried going to the website - it said the URL was incorrect?

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                        #26
                        JCV+

                        Very interesting forum. I had been on Tysabri for a year when my doc told me I tested positive for JCV. I immediately told her I wasn't a risk taker and she agreed and wanted me to go on Tecfidera after 3 month washout period. It's been 2 awful months and I have never felt worse. Did not expect this. Not so sure I wasn't allowed to make this decision too hastily after reading about false positive results and titers.

                        In retrospect I feel like I was kind of pushed toward the Tecfidera by not knowing all this. Especially the G.I. side effects. I have had those since 2007 when half my colon was removed during emergency surgery. Certainly don't want that to be worse.

                        Tec order. Already sent to my mail order pharmacy. Anybody think it's too late to backtrack to Tysabri with new bloodwork?
                        Marilyn

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                          #27
                          LL60,

                          I don't know why the link isn't working. Especially when an identical one previously posted does work. Try going back to my post 5-25 and clicking on the same link. I just did and that one worked. I could email you something direct if you want but you would need to post a link in your profile.

                          The important takeaway is the value at which people are considered JCV antibody + or -. And, that people do switch in both directions. The good news about people who do switch is that they are probably hovering around .20 to .40 titers (very low levels).

                          It might be helpful if people know their titer # because they may want to incorporate that info into treatment decisions or discussions with their doctor.
                          BUT WE ALL NEED TO REALIZE THE ANTI- JCV ANTIBODY TITER NUMBER IS NOT, REPEAT NOT, THE SAME THING AS A RISK FACTOR FOR PML!!!!!!

                          It requires a great deal of explanation to put JCV index numbers into context. It might be best left to conversation between doctor and patient. What is hopefully offered here is the background information which enables or enhances such a conversation.

                          Hi ndmo795j,

                          These decisions are so tough. Only you and your doctor can decide what to do. Take your time. Often we assemble as much information and counsel as we can but finally have to go with our best guess, it seems.

                          Just remember that it is possible that tecfidera could work well for you. Not everyone gets the difficult side effects. Maybe less than half, according to trials. If you decide to go with tec ask your doctor about the possibility of going back to Tysabri, if tec doesn’t work for you. Never easy decisions with this disease. Best to you, hang in there.

                          Comment


                            #28
                            Myoak,

                            Thanks so much for your post. You make perfect sense. That's exactly what I will do. I've been a little flared up and as you know rational thinking doesn't come easy when nothing's working right.

                            Thanks again; I feel much better about all of it.
                            Marilyn

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                              #29
                              Sorry everyone, I've been experiencing some techenical difficulty. I just can't seem to keep my JCV's straignt from my PML's lately. It's a bit far fetched for even me to blame it on my new rx, but I'm just say'n. The timing is suspicious and for whetever reason, JCV is comletely absent from my brain lately when I'm typing. My apologies for the confusion.

                              Comment


                                #30
                                MSW1963,

                                No problem, everyone makes mistakes but only gracious ones such as you are apologetic, even though I hardly think you have any reason to do so. You are obviously a caring person and we value your posts. There is so much to learn and we learn best from those willing to share experiences, thank you for doing so. We all struggle together in this battle with MS.

                                You asked a couple great questions to begin this thread and I knew they would be difficult to address. But I can give you some stats which were presented at the 2013 European Neurological Society (ENS) meeting about 3 weeks ago which might help answer.

                                These are stats for Tysabri patients w/o prior immunosuppressant (IS) use. By the way, Biogen does not consider prior IS use as short term steroids treating MS flare-up. Prior IS use as a PML risk factor is treatment with IS over a period of time, not pulse steroids for a flare-up.

                                JCV index less than 0.9 = PML risk of 1 in 10,000 during months 1 to 24.
                                JCV index less than 0.9 = PML risk of 1 in 3,333 months 25 to 48.
                                JCV index less than 0.9 = PML risk of 1 in 2,500 months 49 to 72.

                                JCV index less than 1.5 = PML risk of 1 in 10,000 during months 1 to 24.
                                JCV index less than 1.5 = PML risk of 1 in 833 months 25 to 48.
                                JCV index less than 1.5 = PML risk of 1 in 769 months 49 to 72.

                                JCV index OVER 1.5 = PML risk of 1 in 1,000 during months 1 to 24.
                                JCV index OVER 1.5 = PML risk of 1 in 123 months 25 to 48.
                                JCV index OVER 1.5 = PML risk of 1 in 118 months 49 to 72.

                                The level of risk acceptable is extremely individual. Risk must meet the sleep rest. What level of risk can you accept and still sleep at night? Think no one would accept a 1 in 118 risk? Well, along with that 1 in 118 risk of PML is a better than a 1 in 3 chance you will be free of disease activity on Tysabri. No other MS med comes anywhere close to that. People with a high degree of disease activity might soberly consider those numbers as pretty darn good and be readily willing to accept them. And, people who have been living a relatively “normal” life free of disease activity may be able to live with a 1 in 118 chance to retain the level of health they now enjoy.

                                No one is going to live forever in these bodies. Wiki quote, “if you drive the average amount for 50 years (reasonable assumption), your chances of dying in a car are roughly 1 in 100.” End Quote. Wow, driving for 50 years is more risky than Tysabri.

                                Thank God, people have choices. Help your doctor out, be a good patient. If you want to let him or her decide on a treatment it is perfectly ok. Lots of people do that and just get on with life. And, if you want to be involved in treatment decisions, your doctor won’t mind that at all, either.

                                Most important, let us support each other. If someone chooses something I wouldn’t, I have no reason to criticize. But I do marvel at how petrified with fear people can be of PML yet the fear of inadequately treating their MS isn’t even in the balance. I personally know someone who has a 1 in 10,000 chance of PML who is very fearful of it and I know someone who has a 1 in 118 chance who lives in peace. I love them both. People are allowed to be different.

                                Lastly, please don’t extrapolate your JCV index numbers and end up believing something which is not true. For example, don’t think, “my JCV index is 5.1, PML is right around the corner”. No, your JCV index is over 1.5 and as such your risk is 1 in 1000 under 24 months, 1 in 123 months 25 to 48, and 1 in 118 months 49 to 72. Sorry about such a long post.

                                The stats were passed to me from someone attending the ENS meeting, I have no link to provide but I have no reason to doubt legitimacy.

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