Announcement

Collapse
No announcement yet.

Tysabri: Positive for JCV

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Tysabri: Positive for JCV

    Morning everyone,

    Well, it's been 13 months on Tysabri and the lab results came back Positive for the JC virus.

    Question: I will be talking to my Neuro. soon bit I wanted to check with folks that are on Ty and are positive for JCV. How do you and your doc mitigate the risk of PML? I read something about titer counts but I thought it would be prudent to send a post out there to the Ty community. I'd like to stay on Ty as my last MRI results reflected no new lesions. We all know how huge this is and I was hoping to stay on Ty as long as possible.

    I wish everyone the best and have a blessed day!

    Demetrios

    #2
    Will try again to respond to you. Having a hard time with this new site. Sure is pretty isn't it.

    I will get my 70th infusion next month. I am JVC +. My titer numbers are high. Way past the 1.5 where all information stops at.

    How do my doctor and I handle it? He doesn't. I do. I changed to every 6 weeks about 6 months ago. HUGE MISTAKE. I now have 3 weeks of extreme fatigue (that only another mser can understand) instead of the usual one week just before an infusion that I was learning to deal with. I can not deal with 3 weeks at a time. Other small little things are creeping back in too. I asked to go back to every 4 weeks and he refused. I will beg again next time I go in. Also next month.

    PML is a real risk. Each person has to deal with it. Only you can know what is best with you, with guidance from a good doctor hopefully. But the decision has to be yours. I am more afraid of MS being like it was before Tysabri. Very afraid. I would never take the risk of going back to the way things were 6 years ago.

    Make sure you know what your titer numbers are. That means a lot. There is another test too that isn't done in the states yet. That will be another tool if it ever comes here.

    Some get MRI's often, I have read here of some getting them every 3 months. I get them once about every 10 or 11 months. I pay from $150 - $1500 depending on where I am in the year with insurance issues or if I go outside of my insurance network. I think average is about every 6 months for most.

    Know the symptoms of PML. Early detection is key to living. But, make no mistake, it is a bad thing to get. You will spend the rest of your life fighting it and the damage it does. Just read and educate yourself. It is a full time job to be sure. But........if Tysabri works for you, there is no reason to jump off if you don't want to. Just don't be casual about it. There is a risk.

    Driving kills every single minute. We all drive. Because we have to. It makes life easier and more fun. But we are very aware of the rules of the road and we learn how to drive and drive safely. Doesn't always protect us. And those with the best doctors and health care and who were very educated about their risks still get PML. You have to ask yourself: could you deal with that?

    Hope this helps.
    Hope I can figure out how to post. They say 3rd time is the charm.

    Comment


      #3
      LL60,

      Thanks so much for the personal information along with the vital facts. I just found out my INDEX is currentlly .51 at this time. I will continue on Tysabri as well. The last year on Ty has reflected no NEW lesions or old ones 'acting up". This alone is huge! That's why I decided to switch because Copaxone was not working for me anymore and things were getting worse.

      "Know the symptoms of PML. Early detection is key to living". Yes!!! I am meeting with my Neurologist on the 26th to discuss all of this thoroughly and to come up with the a "game plan" schedule of how often I should get the following tests done INDEX/Brain MRIs in order to try to mitigate the risk --> early detection.

      Thank you for your extremely honest response!

      Much appreciation and I wish you the best!

      Demetrios

      Comment


        #4
        I just got my test results and I am at 0.46. The doctor I go to does not consider the results as positive until it is over .90. So technically my doctor would consider you negative. You need to talk to your doctor about that.

        I have been on Tysabri for 6 1/2 years. I have done a 3/4 dose every 5 weeks for the last 3 years. Thankfully my doctor allowed me to work with dosages since I am very sensitive to meds. This has worked for me. I had years of active lesions on my MRI scans and tried all but one of the injectable meds, but none worked and I just got worse. But since my first dose of Tysabri I have not had any active lesions!

        I hope all works out for you!
        deege

        Comment


          #5
          Thank you so much! I needed to know this! I will print it out and take it to her! Whew what good news!

          Much appreciated!

          Lisa
          Disabled RN with MS for 14 years
          SPMS EDSS 7.5 Wheelchair (but a racing one)
          Tysabri

          Comment


            #6
            Deege,

            Thanks so much for the information! I am seeing my Neuro this week and will go over the INDEX results again. He definitely said I was positive but a low score. We will talk more about this and what to do i.e monthly blood work and brain MRI's every 3 months. Yup, years of active lesions until Tysabri and would like to stay on it. (for now

            Stay well!

            Demetrios

            Comment


              #7
              http://www.msworld.org/forum/images/icons/icon7.png

              I have started on antiviral medication in the hopes that this will lower my JCV titers.

              I am going back to every 4 weeks infusions after being on every 6 weeks since last spring.

              Next week I will be getting the test for my levels of the L-selectin. "We believe that very low levels of L-selection is a predictive test for the future risk of PML on natalizumab." This is a quote from an article I read on these boards in October.

              I truly really wish there was more information out there for those of us who are JCV positive with high titer numbers. To give up a drug that is like a cure with absolutely no side effects is just such a risk. Not something I am going to do without a fight. And it has been a fight to stay on this med. And I am just getting really tired. Really tired.

              I need a hug.

              Comment


                #8
                tysabri Positive jcvirus

                What anti viral meds are you taking? Is there evidence that these meds can lower the titer? Interesting to me because since I've been on valtrex my titer dropped about 50 points.

                Comment


                  #9
                  Your titer dropped 50 points! What were you? I can find no information on numbers above 1.5 and you were over 50? I run from 2 - 4.6. I had no idea you could even go that high. Are we talking about the same thing? A JCV titer? How long did it take for the meds to work like that? I was thinking I'd give it a couple of months.

                  I gave the information to my doctor, I didn't keep a copy for myself. I think it was from a link that I actually read here too. It was from a conference in Europe if I remember right. If you can't find it, let me know and I will took too. I get information from England. Their MSS website is pretty good.
                  Staying up to date on research is very time consuming. Sometimes to stay sane, you just have to give it a rest for awhile. The problem is, then you can't remember what web sites you were using!

                  Comment


                    #10
                    tysabri jc virus positive

                    Sorry I made an error LL60 .

                    My titer went from 1.12 to .77. I was looking at some other lab results. But even so there was a big drop in the titer. I was surprised to see this change.

                    Comment


                      #11
                      tysabri jc virus positive

                      One other answer to your question LL60. My first titer was from Oct. 2013. Just had lab work done Feb. 2015. I have been on Valtrex since May 2014. Not sure if or how this could affect the titer at all but it was lower.

                      Comment


                        #12
                        Since being in this forum, I've begun to wonder if it isn't those of us with MS and on Tysabri that won't be the ones who find the solution that allows us to remain on the drug. At this point, Tysabri has the strongest efficacy for MS, and yet the doctors continue to want to take us off. I guess my philosophy is "My life, my risk, my choice". Granted, I am 63, but I just don't want someone else determining how I am to live my life. I am JC- at this point, but if I was positive, I know I'd be fighting to remain on the drug along with everyone else. I hope that maybe Valtrex will be one solution.

                        Comment


                          #13
                          I absolutely think antivirals could decrease the titer. I also personally think the JCV could potentially dissipate on its own over time.

                          At one time doctors thought that one someone got the Human Papilloma Virus (HPV) meant a life time of cervical cancer screening. Well all be dog gone...in the past few years, they have found out many strains of HPV goes away all on its own and does not even go into dormancy.

                          So I am not convinced that these viruses can not be eradicated or at least treated.

                          I am greatful for this thread, because if I ever become JCV+...antivirals it is.

                          And I have always been a big proponent of "my risk, my life".
                          Katie
                          "Yep, I have MS, and it does have Me!"
                          "My MS is a Journey for One."
                          Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

                          Comment


                            #14
                            Well, I had to end Ty after 35 infusions with a high +JCV titer number. (always around 3.5)

                            My Neuro and nurse were too worried about my PML possibility(1 in 100), and wanted me to take shots 5 days a month, and pills every day. I decided to do this, and lose the PML risk.

                            Tomorrow will be my 5th shot, and will start the pills soon.
                            A big change

                            Comment


                              #15
                              rsinger

                              Thanks for clearing that up.

                              That's great that your titer came down that much. Hopefully mind will head south in a big way too. There is a lot of research out there on antivirals and MS and it goes back a long way. It is a shock to me how little doctors share with us. It is an easy and fairly inexpensive thing to try.

                              Going to every 6 six weeks got mine down, although they did come back a bit, but never to the high levels they were; but I just didn't do as well going 6 weeks. The fatigue just overwhelmed me and I had some other issues too.

                              I think a combination of spacing out infusions more and trying other meds may be a hope for those on Tysabri with high titer numbers.

                              I'm waiting to get this other test also. The one for the L-selectin levels.

                              I get my 71st infusion tomorrow. The 5 years I was on Copaxone was like injecting water for all the good it did. Tysabri was like a dramatic huge wonderful miracle. I wish Biogen would take some of its billions and fix the PML problem. It would not only help those of us on Tysabri, but those on other meds that can cause PML to a lesser extent. Seems worthwhile to me.

                              ru4cats
                              You are so right. I have learned so much more from these boards than I have from my doctor. So you guys really win hands down. The information and web sites I have been sent to have given me the tools I need to make an informed decision about what is best for me. If I just blindly went to my appointments and did what was suggested I would have been taken off a working treatment years ago and who knows where I would be today.

                              I THANK EACH AND EVERY ONE OF YOU WITH ALL MY HEART!

                              May spring come soon to all of you.

                              Comment

                              Working...
                              X