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    Agree...but about this stupid JCV.

    This is my first post. The title of the string attracted me, so here goes. Tysabri has been my first medication since diagnosis in 2014. I've had huge success, even lost 35 lbs. Flares reduced significantly. My hair looks like crap, but hey, could be age, who knows. I've been JCV negative, like off the charts negative, always. Until last week. Out of nowhere, I skyrocket to 3.25. MRIs are clear, crystal. Everything is cool. Except now I need a LP and to switch up stat to Ocrawhatever if LP reflects a non-active JCV. WTH is with the JCV? Can someone please, for the love of all things decent, fix this. Is it bad enough to have this ridiculousness but to find something that works, works well, only to have it taken from you because of yet another thing that, again, no one knows why it happens and no one knows how to prevent or cure it. Jeez. Talk about double suck. What's next? No Santa Clause too? Mama mia. Ok, I'm done.

    #2
    First, I wouldn't jump onto the Ocrevus bandwagon. For every three that have made the move, 2 regret their decision.

    Second, that seems like a high jump; I'd request a second test just to be sure.

    Third, since the introduction of Tysabri, a lot has been learned about the JC virus and there are ways to stay on Tysabri but mitigate the risk. Here are a couple articles you can mull over. The second article is the medical to back up the 1st. Extended dosing leads to a 94% reduction in the risk of PML with no reduction in efficacy.

    http://markets.businessinsider.com/n...rug-1014956604

    https://actrims.confex.com/actrims/2...cgi/Paper/3102

    Hang in there and don't make any quick decisions. Take it slow and easy, and no, you don't have to give up Tysabri.

    Comment


      #3
      There are folks at my infusion center that are positive. Depending on their titer number and how long they have been on Tysabri, they are infused St 5,6, or 8 weeks. It is worth a conversation with your neuro about.

      I woul definitely get a second JCV titer test to check the number.

      I feel for you. I am still negative, but know at any time, I could convert. Were you sick recently?
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        First a few basics...

        The JC virus causes PML. So, no JC virus, no PML. Around 55% of adults test positive for JCV. Not surprisingly, the older a person gets the more exposure or opportunity to become JCV positive. Same as with other viruses. As we age we are more exposed to whatever is out there; the time element is obvious. It is not unusual convert from negative to positive in many things, including JCV, as we age we are exposed to more things.

        Over half of the population is JCV positive, however, very, very few ever get PML. The JC virus is easily taken care of by a properly functioning immune system, otherwise lots of people would get PML, not just an extremely few.

        Tysabri is a medicine which diminishes immune surveillance against the JC virus. As a result there have been several hundreds of cases of PML in those taking Tysabri. However, a way has been demonstrated to continue taking Tysabri safely even of you are JCV positive.

        There have been no cases of PML reported in those who are JCV positive who extend time between doses to 5, 6, 7, or 8 weeks rather than going the standard 4 weeks between doses.

        Make certain you understand this point... There have been no cases of PML reported in anyone who is JCV positive taking Tysabri 5, 6, 7, or 8 weeks between doses. And, some have been on an extended dosing regimen for over 4 years.

        The reason that there have been zero cases of PML in Extended-Interval Dosing (EID) is because by extending time between doses the concentration of Tysabri becomes diminished enough to allow sufficient immune surveillance against the JC virus.

        If your neurologist has not adopted the practice of placing his/her JCV positive Tysabri patients on EID, you need to get the hell out of there as quickly as possible and go to a MS center or immediately find a neurologist who specializes in MS because at minimum, your health is at stake and possibly more.

        Just to calm you down a bit... my spouse was JCV positive and took Tysabri for many years before going on EID. Beginning in 2013, I pounded the table with her neuro to put her on EID because the theory behind it made perfect sense to me... that being, if the concentration of Tysabri was decreased the immune system might easily take care of the JC virus because over 99.999% of the population with JCV never get PML.

        The EID theory to decrease risk of PML came about after a review in Sweden showed lighter weight individuals got PML more often than heavier ones. The theory developed that the concentration of Tysabri was less in the heavier people which allowed better immune surveillance against the JC virus. So, to decrease Tysabri concentration you could decrease the dose (no neuro was willing to do this publicly because 300mg was the FDA approved dose) or you could extend time between doses. A few brave neuros were willing to do this. The last option was you could gain a lot of weight but that is not w/o problems, obviously. The easiest thing to try was merely to extend time between doses of Tysabri.

        Time has proven that the extended interval dosing theory is correct because no cases of PML have ever been reported in EID with Tysabri.

        You have stated how well you are doing on Tysabri. Virtually everyone I have ever known personally who were or are taking Tysabri has said similar things beginning in 2002 during trials before FDA approval up to present. I have spoken with dozens of people taking Tysabri at the infusion center over the last 16 years and would be hard pressed to recall any reports of any significant side effects among those dozens in 16 years.

        Unfortunately, some people do not have success with Tysabri. And, some develop neutralizing antibodies to it. People have had to discontinue for various reasons. But overall, Tysabri is a powerfully good medicine treating MS.

        How about you? What significant side effects can you report attributable to Tysabri? btw, bad hair is not a side effect reported in trials or clinical practice that I have ever heard or read about. So I think you are good there!

        Please keep in mind how rare it is to experience so few lousy side effects on a MS DMT!

        If Tysabri has largely stopped disease progression for you personally, let me tell you that is a gift a lot of people here would give anything to have! For Heaven's sake think about what you are doing. It is your life. You are responsible for making the right decisions about your life and health.

        If you want to stay on Tysabri and your neuro does not agree to put you on EID immediately then you need to find a neuro who understands Tysabri and best practices better. Find a MS specialist! If you need help doing so, get a loved one to help you. People here are glad to help, also.

        But talk to your present neuro first and be sure to print off the info you find in the link below to educate yourself and you neuro, won't you?

        Please do not allow the force of my convictions to offend you. My earnest desire is the best health possible for you and every person with MS.

        Have courage. You will prevail and you will enjoy health and happiness for many, many years because of your efforts. Stick to it and you can do anything you decide. I believe in you and am here to help you in any way I can; as are many others.

        http://multiple-sclerosis-research.b...talizumab.html

        Comment


          #5
          Hello Kate,

          How are you doing with all this information being thrown at you all of a sudden?

          Please don't let it overwhelm you. Be slow, deliberate, thoughtful and things will begin to make sense in a more orderly fashion.

          Your neuro wants you to get a lumbar puncture, is that correct? Very likely, what he is looking for is the presence of JC virus in CSF, cerebrospinal fluid. Of course, testing positive above a certain threshold would likely initiate measures such as prompt cessation of Tysabri and plasma exchange.


          LP is prudent to help rule out asymptomatic PML. If you test comes back negative... and it is highly probable it will be negative... then you can decide what DMT, if any to take next, or you may decide to stay with what is working and go on dose extension, extending time between doses to 5, 6, 7, or 8 weeks.


          It has appeared to me that neuros sometimes choose 8 weeks if MS is not very active. I have a friend who is JCV positive and was put on 8-week dosing but she got a new lesion so she went to 7-week dosing 2 years ago and has done just fine with no new lesions since.


          Apparently, for highly active MS, dosing is sometimes done for less than 8 weeks. However, keep in mind that no one who is JCV positive and has gone to 5, 6, 7, or 8 weeks has ever gotten PML.

          It has now become a period of more than 4 years for some of those on extended dosing. Compare that to several cases of PML in the last 4 years in those who are JCV positive and stayed on 4 week dosing and you see why it appears to be needlessly risky to get an infusion of Tysabri every 4 weeks.


          Ocrevus is a very good DMT for MS. But it is not without risk, itself. There is good info posted about it in the Ocrelizumab sticky and other threads.


          The question may come down to... is the cancer risk with Ocrevus higher than the PML risk with Tysabri on dose extension? So far, there have been several cases of cancer in several hundred taking Ocrevus and no cases of PML in several hundred taking Tysabri.


          Stay in touch, kid. Lots of people are interested in you and how this is all unfolding.


          You have our sincere thoughts for well-being.

          Comment


            #6
            [QUOTE=Myoak;1509965]Hello Kate,

            "The question may come down to... is the cancer risk with Ocrevus higher than the PML risk with Tysabri on dose extension? So far, there have been several cases of cancer in several hundred taking Ocrevus and no cases of PML in several hundred taking Tysabri."


            I wanted to clarify and expand on the last part of that paragraph... there were no cases of PML in several hundred taking Tysabri on dose extension.

            At the 31st ECTRIMS conference in 2015 Ryerson reported in SID (Standard Interval Dosing of 4 weeks) there were 4 PML cases in 1052 JCV positive patient years.

            Also, Ryerson reported in EID (Extended Interval Dosing of 5, 6, 7, or 8 weeks) there were no PML cases in 1090 JCV positive patient years.

            I will provide a link to her presentation. You may have to sign in to access it (there is no charge to do so), if you wish. If you don't wish to sign in the abstract is provided both at this link and the link I provided in an earlier post.

            Importantly, this data was reported in 2015. Ryerson was tracking EID prior to 2015 so we know that some Tysabri patients have been on dose extension for at least 4 years now with no PML cases reported in medical literature to date.

            I hope you find all this helpful. May your spirit find peace, strength, and direction through knowledge. Knowledge is a key foundation stone for building the best life possible.


            http://onlinelibrary.ectrims-congres...hown.html?f=m3

            Best to you!

            Comment


              #7
              Oh Myoak,

              I can't tell you how much I have appreciated your knowledge and wisdom on my crazy journey with MS since my diagnosis in 2010. All of this information you have just provided is everything I have believed but had to push my neurologist to agree to. Everything I had gleaned from information out there said EID was viable, but others disagreed. I am JC-, but after 7 years of infusions 13 times a year, at 66 I just knew I could "back off" and bit, and I'm now down to 8 a year.

              Katebaun, fight for what you believe is right for you, and listen to Myoak. He has provided to with wonderful information that will enable you to make the best decision.

              Thanks agin, Myoak. Wow, just wow!

              Comment


                #8
                Dear ru4cats,

                You are so welcome and thank you so much for your very kind expressions. If you were able to access Ryerson's presentation you will note that one of the biggest surprises was that the effectiveness of Tysabri did not appear diminished in the extended dosing group. That evidence was quite unexpected. Possibly, neuros placed patients doing best on extended dosing first and that may help explain that group doing so well. Be that as it may, so far, the evidence is strong that there is little to no decrease in the effectiveness of Tysabri in those extending time between doses beyond the standard 4 weeks.

                Also, may I add a note of contrition? I feel that in this thread I was way overboard in expressing my perspective without being sufficiently sensitive to Kate.

                Kate, may I apologize to you? It was your first post here and I came on way too strong without any sensitivity to who you are as a person. I am so sorry. I will try very hard to do better.

                Thanks again for your kind words, ru4cats. I believe I have mentioned before of spending two pleasant summers in Libby, Montana; a beautiful state with wonderfully kind people like you!

                Comment


                  #9
                  Yes, Myoak, we have conversed over the years. I live in Seeley Lake, but have been to Libby many times.

                  Now you've introduced me to the ECTRIMS data base, and I'm off to watch Ryerson's presentation.

                  Thanks again!

                  Comment


                    #10
                    Hello Kate,
                    Best wishes for you as you sort through this.

                    Hello ru4cats,

                    As a patient who is in the preauth stage for switching to Ocrevus (from Plegridy) — may I ask you to elaborate on “...2 regret their decision.”? Where is this from.

                    Originally posted by ru4cats View Post
                    First, I wouldn't jump onto the Ocrevus bandwagon. For every three that have made the move, 2 regret their decision.

                    Thanks!

                    Comment


                      #11
                      KATEBAUN,
                      I wish you the best. I hope you research all the DMT's if you have to make a switch. There's a really great sticky in the Medications forum that is a comparison chart of sorts for all DMT's. You should check it out, if you haven't already!

                      ru4cats,
                      By the way, I'm also interested in why people are regretting their switch to Ocrevus. I hope that doesn't come across antagonistic-- I truly am curious of any negative side effects others are sharing. Thanks!
                      DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                      "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                      - 2 Corinthians 4:16

                      Comment


                        #12
                        Smalltowngirl and MisterMan,

                        The people I am specifically referring to as regretting their move from Tysabri to Ocrevus come from their questions and responses in various forums I visit on a daily basis. I have also joined a couple FB groups. This is not a scientific study in any way but just an accumulation of how the drug hasn't been a good choice for them; they felt better on Tysabri. The stickynote on comparing DMD's lists some of the effects they have encountered. A couple have actually come down with cancer, some have experienced sharp fatigue, one individual had a strong infusion reaction that put them in the hospital. Unfortunately, several wanted back on Tysabri but because they are JC+, their neurologist has refused.

                        Once again, this is just anecdotal evidence from people who asked or responded to a question. I'm sure there are many people who are satisfied with Ocrevus, but I haven't come across them in my travels.

                        That being said, the infusions have the strongest efficacy so I feel they are the way to go. I read about a new infusion that should be out soon.

                        Hope this helps you understand where I am coming from.

                        Comment


                          #13
                          Ru4cats, thanks for elaborating on what you’ve seen. Like smalltowngirl, I’m just curious. Tysabri was never offered to me.

                          Comment


                            #14
                            If Ocrevus doesn't work for you, push for Tysabri. It is a remarkable drug, and 9/10 people have NO side effects. Other than 2 hours a month for the infusion, they lead a completely normal life. It attacks the T cells AND B cells. B cells are the same cells that Ocrevus is going for. Even if you test out JC+, any risk of PML can be controlled through the use of extending the dosing from 4 weeks to 6 weeks or more.

                            Good luck with Ocrevus.

                            Comment


                              #15
                              Originally posted by ru4cats View Post
                              If Ocrevus doesn't work for you, push for Tysabri. It is a remarkable drug, and 9/10 people have NO side effects. Other than 2 hours a month for the infusion, they lead a completely normal life. It attacks the T cells AND B cells. B cells are the same cells that Ocrevus is going for.
                              I have been researching Tysabri too. My issue since diagnosis (which was only a short time before I began Ocrevus) is fatigue, fatigue, fatigue. Not that I would switch DMT's this soon by any means, but just having the knowledge is helpful. With that said, can you direct me to where you're finding that Tysabri attacks both B & T cells? I thought Ocrevus was the only med for MS that "worked on" B cells.
                              DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

                              "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
                              - 2 Corinthians 4:16

                              Comment

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