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    PML and Tysabri

    Hello everyone,
    I am just wondering...I am JCV- and only received one infusion.
    1. I keep reading that people who are JCV+ have 1/250 chance of getting a PML...I know I should be ok for now, but what are my chances...1/650...1/1500 ???
    2. How often should I go for a JCV blood test?...every 2, 3 months?
    Mario

    #2
    I am also JC- (3 tests now and 33 infusions), and in December my neurologist said my risk was 1/11,000. I need to have the test done every six months, and Biogen pays for the test at Quest labs. I need to travel 120 miles, but it makes for a nice day out.

    Comment


      #3
      This is some information that I hope helps. The numbers are from late summer.

      If you are just starting Tysabri and you are JCV - your risk is about 1 in 11,000 of developing PML.

      If you test positive and have no other history of using immunosuppression drugs you rist is 1 in 1, 786 for the first 24 months and then goes up to 1 in 217 for months 25 - 48.

      If you have used IS drugs (and are JCV +) your rist is 1 in 625 those first two years and then goes up to 1 in 90.

      Early fall Rocky Mountain MS Center put the risk of being JCV postive and over 24 months at 1 in 250.

      Deaths from Tysabri induced PML still stand at 22% of those who get it.

      I don't think there are set guidelines on how often you get tested. I have tested positive so won't be getting tested again. It is up to you if you get tested or not. I refused the first two years it was available to me because I was afraid it would affect my insurance. It did not.
      I have had 47 infusions.
      For me, it has been a great drug.
      Hope the same will be for you too.

      Rocky Mountain MS Center did a wonderful article on risk vs benefit on MS treatments a couple of months back. I bet they would still have it posted online.

      Comment


        #4
        Tysabri risk charts

        Tysabri risk charts. Here is a link to some great charts and info, especially to those evaluating risk on Tysabri. You do not have to join, sign in or do anything. Just scroll down and read. IMO, everyone interested in PML risk needs to save this info for future reference.


        Wishing you the best of health!

        **Link deleted - page could not be found. It said you need to update your bookmark, so please try again**

        Comment


          #5
          Hope these links will work for everyone:

          http://www.investorvillage.com/smbd....2048678&pt=msg

          http://chefarztfrau.de/?page_id=716

          Comment


            #6
            Thanks, Myoak! I've bookmarked the site and printed the info to add to my folder for MS. Really helpful!

            Comment


              #7
              ughh! Thanks for the info. My MS neurologist, gotta love her, said she was not gonna test me for my JCV status for another 3 months, even though I am due for one now. She said I don't care if it is positive I would keep you on it anyway. I am thinking hold on sister, I think this is my choice.

              It worries me.

              Thanks again for the information. Very helpful.
              Lisa
              Moderation Team
              Disabled RN with MS for 14 years
              SPMS EDSS 7.5 Wheelchair (but a racing one)
              Tysabri

              Comment


                #8
                my neuro is a big fan of tysabri, I've been on it 6 mos. it's my 1st MS drug. Am JC neg. but very concerned about long term use of tysabri. Biogen even says it hasn't been studied in patients longer than 2 years. Can't help but wonder what tysabri may do after you've been on it for years. Is it truly as wonderful as it's made out to be or w/ ea. dose are patients closer to getting PML? I now wish I'd started on one of the more established MS drugs with a longer track record instead of starting with tysabri right off. I'm going to talk to my doc. about switching to one of the older drugs.

                Comment


                  #9
                  ADavid,
                  I have been on Tysabri for almost 6 1/2 years I was on Copaxone for 2 1/2 years switched to Ty when my MRI was lit up like a Christmas tree and my sx were getting worse. On Ty my progression halted, sx held and my QOL got better (stamina,engergy) I am jvc- and pray to stay - but, am pretty sure I will stay on Ty no matter what! Tysabri has been a G-d send for me .. I only wish I could've been on it 2 years earlier.
                  Linda

                  Comment


                    #10
                    Glad to hear Tysabri is working well for you lindlain. I've never been on anything else so don't have the same history as you, with a negative experience on another DMD. My sx were fairly mild to begin with before I was diagnosed. Some leg numbness, got diagnosed, put on solumedrol for a week, numbness went away, then straight to Tysabri and have had no symptoms since.

                    It bothers me that Biogen openly states Tysabri hasn't been studied in patients for more than 2 years. It's primarily for those, like you, who haven't had success on another DMD. And, of course, the PML risk, which, if you get it, either kills you or destroys your brain. So, I can't help but wonder if I started too aggressively with my treatment, went for the most powerful drug out there, with all the attendant risk, when, in my case, maybe I should have started with one of the CRAB drugs first.

                    I know people that have been on Avonex practically since it came out in 1995 and swear by it. They are as sx free as I am. My neuro dislikes Avonex. He urged me to go on Tysabri from the get-go, which seems to be the most popular drug among his many MS patients, judging from the number I meet at the TOUCH clinic, at his office, of course. Makes me wonder if my neuro is getting financial incentives for prescribing Tysabri. Yes, I know Biogen also makes Avonex, but still, I think I'm going to switch to one of the older CRAB drugs and see how I do. If they don't work, I may go back to Tysabri. But I'm worried about PML. That's one insidious side effect...

                    Comment


                      #11
                      ADavid,
                      I've also never taken anything other than Tysabri. Since I was diagnosed at 58+, my neurologist felt I should take the most effective DMD; evidently, those diagnosed when older have a greater chance of more rapid progression. Our hope was the Ty would stop the MS in its tracks, and I had 6 infusions before I knew I was JC-, which I still am. My only sx is still right leg weakness, although I have had a continual, but slow progression. However, I'm still walking, exercising, and swimming, so I'm happy with my decision. Good luck!

                      Comment


                        #12
                        I have had 16 Tysabri infusions. I have never used any other DMD or immunosuppresant therapy. I have just tested JCV + in my most recent blood test. The spinal tap I had immediately after was missing the thing my neuro was looking for that would have elevated my risk for PML. So I continue on Tysabri.

                        The way I look at it, my MS is here now. It's a fact. PML is a theoretical risk. A maybe. Tysabri is working. My MS is stable. I would not sacrifice that for fear of a theoretical risk.

                        At 24 months my neuro likes to reassess the Tysabri usage. At that time I'm hopeful that BG-12 will be available. He says I'm a perfect candidate for it.

                        Kyle
                        At weddings, my Aunts would poke me in the ribs and cackle "You're next!". They stopped when I started doing the same to them at funerals. Dave Barry

                        Comment


                          #13
                          Hi ADavid,
                          You have a misunderstanding of how long tysabri has been studied. My wife had her first infusion in March of 2002 participating in the Phase 3 trial and has been on it since then except when it was pulled off market in 2005 for about a year. She has done extremely well but she is JCV+ so will probably transition off it at some point. But we do know that tysabri has been studied for at least 11 years.

                          We have been rigorously investigating treatment possibilities for when she discontinues tysabri. For us, BG-12 and an alternative treatment, LDN (low- dose naltrexone) appear to have the best chance for success in halting disease progression. Especially LDN because of its excellent safety profile (first do no harm) but BG-12 has a pretty good safety profile, too. Of course, diet and exercise are very, very important, also. As well as finding methods to decrease stress.

                          One thing about MS is that different people respond individually to different treatments. One size doesn’t fit all, as you know.

                          Oh, and don’t forget, if you are JCV- you have almost zero chance of getting PML. Of course, people do convert from JCV- to JCV+ occasionally so you will probably get tested every 6 months.

                          When people talk about tysabri and PML risk they often leave out a critically important consideration. Seldom mentioned is the risk of ineffectively treating MS and causing much more disability by being on a less effective drug than tysabri. That thought needs to be included in treatment decisions, IMO.

                          Some view disability risk w/o tysabri as counterbalance to PML risk with tysabri.

                          If you are JCV-, the statistical probability is that you will be healthier on tysabri than any other FDA approved med. according to what I see by comparing the effectiveness and safety profiles of all the FDA meds.

                          Best of luck in the choices you make, we are all different and make individual decisions. We all make our best guesses with this disease. Fortunately there is a great deal of research taking place and we can expect better treatments in the future.

                          Comment


                            #14
                            Myoak,

                            Biogen's own website for Tysabri states it has not been studied in patients who have been on it for two years or longer. That's also featured prominently in their ads in publications from the MS Society. If Tysabri has, in fact, been sufficiently studied in patients who have been on it for longer than two years then Biogen would say so. See their website at:http://www.tysabri.com/ and see for yourself.

                            It's this caveat, repeatedly saying it hasn't been studied for more than 2 years, and the fact PML either kills you or destroys your brain, makes me think Tysabri is not the wonder drug folks make it out to be. That's why I'm switching. If after switching I start progressing I'll reconsider.

                            Comment


                              #15
                              Wow, ADavid, sounds like Ty isn't for you. Reading your old posts, I see you've had more negative reactions in your short time on it than I've had in my 34 infusions! Perhaps you would feel more comfortable on one of the injectables. Although Ty is the most effective DMD for MS, it isn't for the faint of heart. There is a risk, but it's a risk I'm willing to take.
                              BG12 should be out soon. Good luck!

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