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    #31
    Originally posted by sarabeach123 View Post
    Does anyone know if there are any studies that indicate that dose extension is also valuable for those people who are JCV negative?

    I don't really understand how "negative" doesn't really mean "zero". I am in the negative range, but it's really just a low level. There isn't much difference between the fine line between negative and positive.

    I asked my neuro about dose extension but he said he will only broach that conversation if my JC titre levels are positive.
    Regarding your first question there are no published studies currently available. Perhaps there will be at some point. That said, common sense would dictate dose extension may delay conversion from JCV- to JCV+ for the same reason dose extension lowers PML risk by 90%... that is, the less concentration of Tysabri, the more immune surveillance against JCV. But good luck convincing someone, especially a doctor, who doesn't want to be convinced.

    But also, perhaps your MS is quite aggressive and your doctor believes 28 day dosing has the best chance of controlling MS, so factor that consideration in, also.

    I believe most neuros are sticking with 28 day infusions for JCV- patients, but certainly not all. It is easy to understand those doing well on Tysabri and are JCV- wanting to remain JCV-. We have no data available on whether dose extension reduces JCV conversion rate but it seems highly probable based on why it reduces PML risk.

    Depending on how strongly you feel about it, you may have to find a neuro who will work with you. If your present one will not even discuss it, that is not a good sign for doing what you want with your life, if does extension is what YOU want to do.

    You asked why negative does not mean zero on the JCV test. It is because the test does not measure JCV; it measures JCV antibodies. The less JCV antibodies, the less activity against JCV which means the less likely JCV is present, or has been. The answer is much more complex but this much may help understand.

    You are correct in thinking it is not a perfect test. But it is the best that can be done right now. A few years ago, there was no JCV test so what we have is a huge step in the right direction and has value even if it is not perfect.

    Of course, if you factor in medicine cost, less infusion cost, fewer doctor visits, all those factors favor dose extension, also.

    If you are JCV- there is no PML risk unless you convert. So, being JCV- and going on dose extension can't lower PML risk. That is as far as your doctor is willing to discuss, unfortunately.

    Your desire for dose extension may save your health and your if your doctor would discuss it. It is unknown whether dose extension would delay or prevent conversion from JCV- to JCV+. But if dose extension does not see an increase in MS activity, and studies prove it doesn't, why not save money and time, at minimum? Tysabri costs about $6,000 per dose every time you infuse.

    And, at best, on the possibility you would not convert to positive on dose extension, it could potentially save your life. Where is the downside? Great question for your neuro. But as I said, good luck.

    You definitely can be JCV- and go on dose extension if you want to but you will need a neuro willing to do it. Seek and ye will find, depending on how strongly you feel about it.

    Best wishes!

    Comment


      #32
      Morning Myoak,

      Thanks again for all your great wisdom. I have "cut and pasted" your response to a file I keep on my desktop.

      I hope you don't mind, but I have shared your wisdom and knowledge with others who have asked similar questions on different forums.

      Kris

      Comment


        #33
        I am 8rh year on Tysabri, JCV negative, and still infuse every 28 days. But there are others that are negative that have extended to 5 or 6 weeks.

        I really feel it when I am due for my infusion. I start to get more fatigued, and with it, increase in cognitive struggles, dizziness, tingling, etc.... I have had to sometimes wait 5 weeks, and it is hard. So while it is not a symptomatic treatment, I am one of the people who get an added benefit.

        So for that reason, I am sticking to 4 weeks. Dreading the day I have to change.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #34
          Originally posted by ru4cats View Post
          Morning Myoak,

          Thanks again for all your great wisdom. I have "cut and pasted" your response to a file I keep on my desktop.

          I hope you don't mind, but I have shared your wisdom and knowledge with others who have asked similar questions on different forums.

          Kris
          Hello Kris,

          Thank you for your very kind expressions! Of course, you are most welcome to use anything I post which may help others. Hopefully, you will correct the typos I always seem to make but you may post whatever wherever you wish.

          I don't have time for FB and the rest of social media, anyway, so what you are doing is a good thing. Knowledge which has the potential to improve or protect someone's life should definitely be shared, so thank you my good friend, for your efforts!

          Comment


            #35
            Originally posted by pennstater View Post
            I am 8rh year on Tysabri, JCV negative, and still infuse every 28 days. But there are others that are negative that have extended to 5 or 6 weeks.

            I really feel it when I am due for my infusion. I start to get more fatigued, and with it, increase in cognitive struggles, dizziness, tingling, etc.... I have had to sometimes wait 5 weeks, and it is hard. So while it is not a symptomatic treatment, I am one of the people who get an added benefit.

            So for that reason, I am sticking to 4 weeks. Dreading the day I have to change.
            Why should you have to change? EID is just an option, and since you are JC-, why would you have to change from SID? It you are doing well at every 28 days, I say stay right where you are.

            Comment


              #36
              Originally posted by ru4cats View Post
              Why should you have to change? EID is just an option, and since you are JC-, why would you have to change from SID? It you are doing well at every 28 days, I say stay right where you are.
              Thanks ru4cats. I am staying put at 28 weeks as long as I stay negative.

              My neuro gave me the option to extend out to 5 or 6 weeks if I wanted, but he wasn't recommending I do it. Just that some people want to due to inconvenience of getting the infusion, time off of work, or for financial reasons.

              At my next appointment, I am going to ask about the dosing interval and conversion rate correlation to get his thoughts.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #37
                Originally posted by pennstater View Post
                Thanks ru4cats. I am staying put at 28 weeks as long as I stay negative.

                My neuro gave me the option to extend out to 5 or 6 weeks if I wanted, but he wasn't recommending I do it. Just that some people want to due to inconvenience of getting the infusion, time off of work, or for financial reasons.

                At my next appointment, I am going to ask about the dosing interval and conversion rate correlation to get his thoughts.
                I think you meant 28 days, because 7 months would be really nice. pennstater thanks for sharing your neuro's thoughts. Mine is on the older side of young, with hundreds of patients at a reasearch hospital. It surprises me that he does not support EID either, but said he could be convinced if I do well in upcoming years or for other reasons. He's especially not behind doing it just for risk avoidance if not JCV +

                During my 6 month checkup this past Monday he mentioned that Biogen is doing a formally registered study on EID. Since the study is formally registered, they have to report the results. So it should be interesting.
                All the best, ~G

                Comment


                  #38
                  Originally posted by gargantua View Post
                  I think you meant 28 days, because 7 months would be really nice. pennstater thanks for sharing your neuro's thoughts. Mine is on the older side of young, with hundreds of patients at a reasearch hospital. It surprises me that he does not support EID either, but said he could be convinced if I do well in upcoming years or for other reasons. He's especially not behind doing it just for risk avoidance if not JCV +

                  During my 6 month checkup this past Monday he mentioned that Biogen is doing a formally registered study on EID. Since the study is formally registered, they have to report the results. So it should be interesting.
                  May I quote and comment about one sentence concerning EID, extended interval dosing? "He's especially not behind doing it just for risk avoidance if not JCV +".

                  There has been no study published regarding the question of whether EID slows the rate of conversion from JCV- to JCV+. So, your neuro does not know any more about it than you or anyone else unless he is currently doing that study, and he/she isn't.

                  When a review was published years ago showing the rate of PML was higher in lower weight Tysabri patients than higher weight ones, common sense told us that less Tysabri concentration would allow the body better immune surveillance against JCV. That review demonstrated a 90 lb patient has greater PML risk than a 140 lb patient due to the concentration of Tysabri.

                  Common sense held that if a Tysabri patient extended time between doses, the concentration of Tysabri would be less and fewer cases of PML would result. But it took 5 years before a study was published confirming what common sense told us 5 years earlier.

                  That interval was not a happy time in my life because I fought like you would not believe with the treating neuro for dose extension. It took nearly a year to get my wife on dose extension. BTW, he also put his OWN wife with MS on dose extension at that time!

                  Here is my point... common sense says that with greater immune surveillance against the JC virus how likely is it the rate of conversion is NOT affected? Obviously, it is very likely the conversion rate will decrease with less Tysabri because JCV and PML is not a problem in the general population who are not taking Tysabri.

                  The problem facing neuros is two-fold... there is no published study for guidance so common sense must be used, but good luck on that front with a neuro, my experience was horrifically argumentative but I did so because life was at stake.

                  The second problem for neuros is... by extending dosing will MS be held in check? For most people on EID MS IS held in check: we have studies proving that point. BUT is MS held in check for you, or in aggressive cases? That rightfully concerns your neuro. What he/she knows is every 28 days is working and has an understandable reluctance to alter success.

                  For me, the common sense probability is that EID reduces conversion to JCV+. I have no scientific proof because there is none. But I had none about EID reducing PML rate but it certainly was easy to hypothesize using common sense.

                  When it comes to my life and those of loved ones I am fighting for what I believe, especially when I am convinced of its validity. Its my life; not my neuro's. I'd rather P off the neuro than convert to JCV+ needlessly. Tysabri is a superb MS DMT compared to the others.

                  Just my thoughts.

                  Comment


                    #39
                    Originally posted by Myoak View Post
                    The problem facing neuros is two-fold... there is no published study for guidance so common sense must be used, but good luck on that front with a neuro, my experience was horrifically argumentative but I did so because life was at stake.
                    Bingo, Myoak.

                    I hope you don't construe my statement of my experience with my neurologist as spreading misinformation, because as you say there are no studies proving EID slows the rate of conversion from JCV- to JCV+.

                    As someone who physically takes this drug into my veins on a regular basis, I, personally, weigh the risks and rewards every single day of my life - sometimes several times a day. I am aware of the back-and-forth about EID, thanks in part to your great information, and I have noted your citation about large vs small people. My next dose is 28 days from the last one and my next JCV test is in mid-january. I'm going to start a graph that corresponds my dose dates and weight with my titer, for fun.

                    I think it's fair not to bury another part of my post as an individual though. I was participating in the discussion and relaying my neurologist's pretty tolerant perspective. I respect my doctor. He sees thousands of patients every year. From my perspective and his, he is there to share his expertise and experience as I make my own decisions.

                    That he doesn't personally support the idea of EID if I am JCV negative is just another valuable piece of information for me as an individual patient. I completely lost my vision at one point - can you imagine that? - and he does not want to see me lose it permanently.

                    And still these were his thoughts, not a mandate.

                    Given all facets of our discussions about EID, we have to be able to weigh risks and rewards with our doctors in this forum.

                    What do you think about the Biogen study on EID?
                    All the best, ~G

                    Comment


                      #40
                      Originally posted by gargantua View Post
                      My next dose is 28 days from the last one and my next JCV test is in mid-january. I'm going to start a graph that corresponds my dose dates and weight with my titer, for fun.
                      Correcting that last part - sometimes I DO go 6 or 7 weeks between doses, so over time the information could be interesting. My titer did go DOWN since I started Tysabri and I wonder if it will correspond with the differently-spaced intervals. Thanks again.
                      All the best, ~G

                      Comment


                        #41
                        Originally posted by gargantua View Post
                        Correcting that last part - sometimes I DO go 6 or 7 weeks between doses, so over time the information could be interesting. My titer did go DOWN since I started Tysabri and I wonder if it will correspond with the differently-spaced intervals. Thanks again.
                        Hello G,

                        I hope you will excuse me for occasionally being abrasive. Politeness is the flower of humanity, as someone has said.

                        I think you have a pretty good handle on the known pros and cons of Extended Interval Dosing. Of course, we all would like to know more of the unknowns, at least patients, doctors, and caregivers. Biogen is a different story. They know a great deal about Tysabri they don't divulge. One example... Biogen used to publish MONTHLY figures for PML with Tysabri but they reeled that practice in. My guess is that marketing, business, making profits, drives the bulk of what they do. To think otherwise is painfully naive, IMO.

                        You asked what I thought about Biogen doing an EID study. My thought is they are WAY overdue, years overdue. Others, independents, were studying the question 5 and 6 years ago, minimum. Of course, Biogen sells twice as many doses at 4 week infusion intervals than at 8 weeks so studying EID makes no business sense, or so they thought. But today it does make business sense if more JCV+ MSers remain on Tysabri, even at 5,6,7, or 8 weeks by de-risking PML. So now, when it makes business sense they are willing to study EID, God love 'em!

                        Individual neurologists took the lead in EID with Tysabri and they are taking the EID lead with Ocrevus, also. These are the brave souls who are advancing medicine for the benefit of patients and I admire them for doing so.

                        It will be interesting to track your JCV titer to see what effect weight and/or dosing interval may have on it. But please keep in mind that JCV titers are difficult to measure; it is nowhere near an exact science. In fact, we shouldn't even say we are measuring JCV titers because the virus is not being quantified. It is called the JCV antibody test because it is a test measuring the body's reaction to the virus, not the virus itself.

                        As noted, the JCV test is not as precise we would like. My wife's titer usually ranged between 2.8 and 4 somewhat randomly on 28 day dosing with little weight change, if I recall correctly. I would note that on EID the titer was 2.8 a couple of times toward the end on Tysabri. Please do not read too much from one person; there is no scientific value in what just one person does. Plus, we were attempting to diminish JCV using a specific anti-malarial but we have no idea if doing so had any value. It was my personal, untrained, unschooled, non-professional hypothesis that using it MAY diminish JCV and MAY diminish EBV, too. My speculation only. Not something MSers should do but something for professionals to study, if doing so has merit.

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