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    stopping Tysabri due to NEDA?

    Fourth Tysabri infusion today. The nurse practitioner said something about “When you go off.” I was surprised and asked, “have you ever heard of someone going off Tysabri for any reason other than bad reactions or JCV-related indications?” She said “yes” when things cleared up.” And I said “you mean in people with Crones?” and she said “no, with MS.”

    I have not asked my neurologiist if I could go off Tysabri if I get to a point where there is no evidence of disease activity. I was diagnosed in April 2018 and there was a lot of disease activity at that time so it may be rather soon. I have asked him about the process of transitioning to other meds. The NEDA scenario is a question I’m planning to ask this coming April.

    What the infusion nurse said did not sound accurate to me though. I would love to subscribe to that plan of course, and every day I imagine staying in remission.
    All the best, ~G

    #2
    I haven't heard of this. So the nurse is suggesting that people go off Tysabri once they stop relapsing? That seems crazy, as that is the purpose of the meds, to prevent relapses that contribute to future progression.

    I am in 8th year Tysabri, still JCV-, no MRI disease activity and pretty stable symptom wise (very slow progression).

    I asked my neuro last visit about going off, could I be SPMS or just age out (I am 55)? The reality is that we don't know if it is Tysabri doing it's job or just my disease course. But since I was relapsing and progressing at a faster pace prior to Tysabri, we have to give it credit there.

    As far as age, there used to be a thought that MS slows down when older, that it fizzled out. Then they said no, it doesn't. Now they are studying it again.

    In the end, my neuro said he wasn't comfortable with the risk of going off it based on where research is currently, but that it was my decision. I decided I am not either, so staying on it. Down the road, that decision may change.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Originally posted by pennstater View Post
      I haven't heard of this. So the nurse is suggesting that people go off Tysabri once they stop relapsing? That seems crazy, as that is the purpose of the meds, to prevent relapses that contribute to future progression.

      I am in 8th year Tysabri, still JCV-, no MRI disease activity and pretty stable symptom wise (very slow progression).

      I asked my neuro last visit about going off, could I be SPMS or just age out (I am 55)? The reality is that we don't know if it is Tysabri doing it's job or just my disease course. But since I was relapsing and progressing at a faster pace prior to Tysabri, we have to give it credit there.

      As far as age, there used to be a thought that MS slows down when older, that it fizzled out. Then they said no, it doesn't. Now they are studying it again.

      In the end, my neuro said he wasn't comfortable with the risk of going off it based on where research is currently, but that it was my decision. I decided I am not either, so staying on it. Down the road, that decision may change.
      Thanks Pennstater. Yes, my complete impression has been that in ideal cases it is a disease stopper but not something you "go off."

      Interestingly my neuro said "it can speed up when you are older," but maybe he meant in cases like mine and yours was speaking specifically to your experience.

      And the infusion nurse, of course, might know people who had no disease activity and decided to go off.

      I don't think it's a good idea to spread false hope though - it seems like such a grave decision.
      All the best, ~G

      Comment


        #4
        Just to clarify, my neuro didn't say it fizzled out or slows down with age. I was referring to general discussions and articles that I have seen over the course of time having MS. When first diagnosed, common to hear that it slowed down after 60. Then, doctors were saying not true.

        Agree that nurse is spreading false hope. The goal of the meds is to have patients not relapse, therefore, showing no signs of new disease activity. Those going off because the medicine did what it is designed to do are taking a chance, one I am not willing to risk.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          I am almost 67, and I have no plans of stopping Tysabri. I have moved to extended infusions "just because" at my age I believe it's best to keep the medication level as low as possible. I am up to 7 weeks and might push up to 8 in a year or so. The theory of NEDA sounds nice in the abstract, but I'm just not willing to take the risk. MS is just too sneaky! The MS Center in Colorado has a study going as to whether older people with MS still need a DMD. It should be out in 2020 or so, but I believe I'll still stay on Ty.

          Comment


            #6
            Originally posted by ru4cats View Post
            MS is just too sneaky!
            Agree wholeheartedly! I look forward to getting on extended dosing when my neuro feels better about Tysabri slowing my disease course. And very much looking forward to the results of that study!

            I'm almost wondering if I should say something to that infusion nurse next time. I do like her, but she does also work in a place where she sees many different types of patients on many different drugs, so she is not necessarily an expert on all of them. Anyway, I would prefer she be an expert at giving infusions... Perhaps I will diplomatically try to see if she picks up that thread again, and I'll then voice my thoughts also in a diplomatic way, after she has jabbed me
            All the best, ~G

            Comment


              #7
              JMHO, but going off Tysabri because of NEDA is a horrible idea. Kind of like folding up your umbrella on a very rainy day because you are dry under it... what do you think is going to happen?

              Tysabri is so effective for many PwMS they show no evidence of disease activity (NEDA). Most MS DMTs are like a leaky umbrella, I'm afraid. Be that as it may I seriously question the wisdom of halting use of what is providing coverage... umbrella or DMT.

              After years of NEDA on Tysabri it is too easy to assume MS is benign and discontinue an effective med or switch to another one. I think most who go off Tysabri regret having done so. My wife is one. She switched from Tysabri to Ocrevus and it was a mistake. Ocrevus is not nearly as effective for her.

              She was NEDA the entire time from 2002 to late 2016 on Tysabri only having a severe flare during the year when Tysabri was off market in late 2005 and early 2006. Today, after a year and 9 months on Ocrevus, many of her old MS symptoms have returned... stabbing pains in her eyes, numbness in limbs, debilitating fatigue, etc.

              She was NEDA on Tysabri and stopped taking it. A huge mistake.

              That nurse is so full of ..it. I better stop, I'm about to use inappropriate language. Let me just say stopping a medicine because it is working has to be the dumbest idea possible. I hope it is only a case of misunderstanding or incomplete conversation.

              If you have MS and are NEDA on a med switching or stopping is taking a massive, massive risk to the health, quality of life and well-being you now enjoy.

              Comment


                #8
                Myoak,

                Wise words and well said. I'm so sorry to hear that your wife isn't doing well on Ocrevus. She was a Tysabri warrior for so many years, choosing to remain on the drug even though she is JC+. Can't she go back or is the risk just too high even with extended dosing?

                Comment


                  #9
                  Originally posted by Myoak View Post
                  That nurse is so full of ..it. I better stop, I'm about to use inappropriate language. Let me just say stopping a medicine because it is working has to be the dumbest idea possible. I hope it is only a case of misunderstanding or incomplete conversation.

                  If you have MS and are NEDA on a med switching or stopping is taking a massive, massive risk to the health, quality of life and well-being you now enjoy.
                  Myoak just to clarify, what the nurse said was a totally new scenario to me too. I have only been on Tysabri for 3 months and would not consider going off of it pending risk factors deeming it necessary.

                  I am going to see if the infusion nurse is still towing that line next time and if she is I will take further steps. I agree it is wrong to tell people this.
                  All the best, ~G

                  Comment


                    #10
                    Originally posted by Myoak View Post
                    She was NEDA the entire time from 2002 to late 2016 on Tysabri only having a severe flare during the year when Tysabri was off market in late 2005 and early 2006. Today, after a year and 9 months on Ocrevus, many of her old MS symptoms have returned... stabbing pains in her eyes, numbness in limbs, debilitating fatigue, etc. .
                    Thank you for sharing this - my thoughts are with your wife too.
                    All the best, ~G

                    Comment


                      #11
                      Sounds completely moronic to me.

                      After just 4 treatments you have no idea how well you will do long term on a medication. You could simply be in a period of remission after a period of relapsing. That's the textbook definition of relapsing remitting multiple sclerosis.

                      Any drug that has effectively subdued a chronic, progressive disease should be embraced and not discontinued.

                      For now, I would simply ignore the infusion nurse. If the neurologist makes the same bizarre claim in April - find a new neurologist.

                      Comment


                        #12
                        Originally posted by Marco View Post
                        Sounds completely moronic to me.

                        After just 4 treatments you have no idea how well you will do long term on a medication. You could simply be in a period of remission after a period of relapsing. That's the textbook definition of relapsing remitting multiple sclerosis.

                        Any drug that has effectively subdued a chronic, progressive disease should be embraced and not discontinued.

                        For now, I would simply ignore the infusion nurse. If the neurologist makes the same bizarre claim in April - find a new neurologist.
                        Thanks. My neurologist made no such claim.

                        The infusion nurse said it.

                        I was never considering doing it.

                        All the best to all,

                        G
                        All the best, ~G

                        Comment


                          #13
                          Hello, Thank you all for the kind thoughts.

                          In defense of the poor nurse I criticized ... people sometimes do choose to take Tysabri for a limited period because of PML concerns. The first 12 months on Tysabri for those who are JCV positive the PML risk is 1 in 5,000. Months 12 -24, the risk is 1 in 1111. Please click on the link below to find the newest chart on PML risk from Bart's:

                          http://multiple-sclerosis-research.blogspot.com

                          Keep in mind this chart reflects standard 4 week dosing and does not reflect dose extension, however, it does contain a note about the 88% reduction in PML risk for those who are on dose extension.

                          Unscientifically, just to satisfy my own curiosity and calculations, it appears to me that the PML risk for those who are JCV positive and are on dose extension the PML risk appears to be about 1 in 400. I would hate to be quoted on that but, as stated, that is my estimation based on the Ryerson dose extension study figures. 1 in 400 is high, however, 399 out of 400 not getting PML is pretty good, also. And, if your MS is in check with Tysabri and you lead a largely normal life, that is persuasive, too.

                          I am aware that PML risk is being stratified according to JCV titers. When those figures will be available, I have no idea but when they are they will be presented at one of the MS conferences and will be available. I will provide them when/if they become available.

                          As far as a high JCV titer switching back to Tysabri from Ocrevus... wow, that is a really, really tough argument to win. For now, my wife wants to wait, she is hoping things get better, we'll see. Thanks for all the good thoughts!

                          Best!

                          Comment


                            #14
                            Question

                            Originally posted by Myoak View Post
                            Hello, Thank you all for the kind thoughts.

                            In defense of the poor nurse I criticized ... people sometimes do choose to take Tysabri for a limited period because of PML concerns. The first 12 months on Tysabri for those who are JCV positive the PML risk is 1 in 5,000. Months 12 -24, the risk is 1 in 1111. Please click on the link below to find the newest chart on PML risk from Bart's:

                            http://multiple-sclerosis-research.blogspot.com

                            Keep in mind this chart reflects standard 4 week dosing and does not reflect dose extension, however, it does contain a note about the 88% reduction in PML risk for those who are on dose extension.

                            Unscientifically, just to satisfy my own curiosity and calculations, it appears to me that the PML risk for those who are JCV positive and are on dose extension the PML risk appears to be about 1 in 400. I would hate to be quoted on that but, as stated, that is my estimation based on the Ryerson dose extension study figures. 1 in 400 is high, however, 399 out of 400 not getting PML is pretty good, also. And, if your MS is in check with Tysabri and you lead a largely normal life, that is persuasive, too.

                            I am aware that PML risk is being stratified according to JCV titers. When those figures will be available, I have no idea but when they are they will be presented at one of the MS conferences and will be available. I will provide them when/if they become available.

                            As far as a high JCV titer switching back to Tysabri from Ocrevus... wow, that is a really, really tough argument to win. For now, my wife wants to wait, she is hoping things get better, we'll see. Thanks for all the good thoughts!

                            Best!
                            Hi MyOak and everyone! Thanks for all the great info, as usual. MyOak I’m confused about what you wrote and was hoping to clarify: when you’re jcv+ the PML risk is 1/400 on dose extension and 1/1111 after two years when jcv+ on the regular schedule? So the PML risk is actually higher when on dose extension?

                            Also, does the PML risk decrease for jcv+ people on longer dose extension (5 weeks vs 6 weeks, for instance)?

                            Just thought I’d ask. Going to go research more now. 😊
                            "It matters not how strait the gate,
                            How charged with punishments the scroll,
                            I am the master of my fate,
                            I am the captain of my soul." ˜William Ernest Henley

                            Comment


                              #15
                              Myoak,
                              I am sorry your wife is not doing better; she was my Tysabri hero. My Dr. at the RMmsC, told me when I was considering Ocrevus that it did not halt sx I stopped considering it.
                              Maybe when you were giving your figures for the pml extended doses you meant 1 in 4,000 ??

                              gargantua,
                              I have been on Ty 12 years. It halted many of my sx and progression. My MRIs showed no new lesions and many of the old were smaller or gone I will turn 70 soon..I have no plans to go off Tysabri. I do exercise and eat fairly healthy along with my meds. I have been on extended doses(every 8 weeks) for around 2 years..my jcv fluctuates between .19 and .30.

                              I hope Ty works at least as well for you
                              Linda

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