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    Tysabri opinion

    Hi Everyone! I really need some opinions on weather to go on Tysabri or not to take the chance. I am J.C. positive so I had pretty much decided not to go on it. Well my MonSter has reared its ugly head again and I now have a rather large lesion on my cerebellum, real dizzy all the time but still getting around with a cane and the walls. I can no longer take any of the other drugs due to various reasons but I do not have any enhancing lesions right now. My neurologist thinks If I do not go on it, I will be in a wheel chair soon but is that worst than possibly dead or worse than wheel chair. All opinions will really help in making this decision, not just from people already on tysabri but also from all us who could face this decision in the future. The more responses the better. Thanks in advance, I have no one around here that could possibly understand.

    PEACE
    Tortis

    #2
    this post meant for questions

    sorry about that, meant to send it to questions.

    Tortis

    Comment


      #3
      Tortis: I moved the thread for you. I am on Ty, and am JCV-. However, I can say that I will stay on even when I am JCV+. I don't mind the risk because they manage the risk so well. It will be better once you find out your index number and your real risk for getting PML up front. That way you can better make an informed decision. Would I stay on Ty with a 3.8 index? Yes, most likely. It has kept my lesions at bay. I am SPMS now and even though it is not rated for my type of MS, it helps me so we don't stop it. I feel better and move better with Ty. Its worth it to me.

      Good luck with your decision.

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

      Comment


        #4
        Hi Tortis. I like your avatar.

        I was JC+ and on Tysabri for 4 years with no ill effects from the meds.

        I began Ty before they started testing for JC virus, and when they did start testing for it and determined I was positive, they still allowed me to stay on it because my JC virus levels were low enough to not contraindicate the drug.

        The JC positive status alone does not mean Ty is not a safe choice; It depends on how high your levels are. But, if you are JC+ and are on Ty for a longer period of time, the longer you are on it the greater the risk.

        I would suggest you take your neuro's advice and give it a try. I was previously on Avonex, and the side effects from it were significant compared to Tysabri. While on Ty, I had no adverse side effects. I felt as good coming out of my infusion as I did going in. Such a welcome relief from the malaise and achiness that Avonex caused! Patients are closely monitored during use of Tysabri through the TOUCH program by the manufacturer and the infusion facility. They test your JC levels at every infusion (patient choice).

        Everyone responds differently so I can only give you my personal experience with it. I was in a big relapse when I quit Avonex. After one month of flushing my system of steroids and Avonex, they placed me on Ty. I had severe numbness in my hands that stayed with me for almost nine months, and I had despaired that it would ever subside. After being on Ty with no relapses for seven months, I realized one day the numbness had receded and today my hands are normal sensation. I'd never had relapse symptoms last that long, but i believe the Ty gave me a break from relapses long enough to heal, and I never had a relapse while on it for over 72 infusions. If you go on this drug, I hope your experience is as good as mine was.

        Comment


          #5
          Tysabri or not?

          I was on Tysabri for 3 1/2 years. I'm also JCV +.
          I did amazing on Tysabri. Felt great, no new lesion activity, no exasperation's.
          But...
          because I was on it for so long it did increase my PML risk. Finally my doc said that his practice would no longer treat patients who are JCV positive and that had been on Tysabri more than 45 infusions.

          What to do??? I didn't want to change doc's. I'd been with him since he dxd me 10 years ago. I decided not to take the risk. I sadly went off and started Tecfidera oral when released
          Enough about me...
          I would go with what your doc believes to be the best thing for you right now. Tysabri is extremely aggressive and has the best hope for you to stop or slow your quick progression right now.
          Go on it for 2 years (24 infusion because most cases of PML are after 40 infusions. You have to make a choice for today's MS battle. I f it were me I'd get on it asap.

          Comment


            #6
            I think I was PML+ when I started monthly Tysabri infusions. I had a CJV scare after I stop infusions for a few months, after approximately 1yr on monthly infusions. MRIs and my MS doc indicate it was MS 'rebound' progression from stopping infusions, and not CJV.

            I believe my PML+ status is the result of dietary exposure unrelated to Tysabri, but that's just my opinion.

            Other than the rebound exacerbation, my improvements after the first 3-4 months have been life changing. After the rebound, I seem to have reached a plateau in terms of improvements. I'm undecided about possible improvement in fatigue sx's.

            I started Ty with a 10yr MS dx. Tried Copaxone shortly after my dx, but had to stop after 2-3yrs due to an 'adverse event', followed apprx. 6mos. later by Rebif for a couple of months, but just did not believe it was making any improvements, only making me sicker with flu type side effects.

            I lost confidence in the DMDs for a few years, then reconsidered Tysabri after hearing about the improvements other Ty patients were experiencing.

            Hope this info helps you weight your options, and best of luck with your decision.

            Comment


              #7
              Hi Tortis,

              There is a Tysabri thread under the medications forum that you might find useful as well.

              I would find out your titer number for the JC Virus and reassess your risk. I would also discuss if you start on Ty the monitoring process (how often titer checked, how often brain MRIs). Finally, you want to discuss the withdrawal from Ty when you stop and what the next options would be.

              It is a personal choice, but I opted to go on it to stop progression. I am still JC- though.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                JC + and on TY

                It is an individual choice. I have had 56 infusions. In over 4 years on TY I didn't have a single relapse and minimal progression. I went off TY for 6 months to try Tec at my doctor's advice. I had a relapse and had to begin using a cane. After retesting for JC and finding that I had low titre # I went back on. It really scared me what could happen during a relapse. I will stay on TY despite any PML risk.

                Comment


                  #9
                  I tested positive prior to the testing of titer and opted for Gilenya. There was case no. 1 in this past summer of PML in a Gilenya user who had other factors- still no FDA final report as to a connection or not. Doing research for that, I discovered that the Ty risk for PML is significantly higher for people weighing less than 60 kg- do the conversion to pounds. But if those folks went for infusions every 8 instead of every 4 weeks, it dropped the risk significantly. Please do ask your neuro about the weight/dosage correlation. You are in a tough spot. Have you already addressed all the dietary/lifestyle measures within your control?

                  Comment


                    #10
                    Tysabri opinon

                    Hello everyone! I just wanted to thank all of you for your great reply's. I have not made a decision yet but I will post it when I do. It may be awhile yet as I am scared fertilizerless.
                    Once again thanks!
                    PEACE


                    Tortis



                    {I do not understand all that I know}

                    Comment


                      #11
                      (((Don't be scared, Tortis!)))

                      Odds are very good that it will help you. If you go on it, consider keeping a little daily journal to note how you feel. It will help you track possible side effects and provide a baseline for cognitive ability. Well, writing, anyway, and you'll have evidence to review if you feel like things are questionable. Plus if you're anxious about anything it has the added bonus of service as a safe place to vent. But...based on statistics, more people were helped by Tysabri than felt poorly while on it, and any risk of PML is monitored closely.

                      Comment


                        #12
                        I have been on many of the MS treatments and whew I won't begin to get into that.

                        I was on Tysabri for a year and tested negative for the JC prior to beginning infusions. Once I tested + my neuro stopped the Tysabri and after a few months I started Gylenia . I have been on that for a year now and my latest MRI was ok. Good luck with your decision.

                        It's an individual choice. Talk to your doctor first about the risks.
                        I am a phenomenal woman; and still I rise.

                        Comment


                          #13
                          JC positive only means you have a greater possibility of PML. It is still very rare.

                          Right now you have a near 100% possibility of MS progression if you don't go on Tysabri.

                          It's up to you but I would go on it if I were in your shoes. The truth is that I am in a similar situation. Since I started TY 3 1/2 years ago, I've had no more plaques. I may be one of the ones who gets PML but I still think it is worth the risk.

                          Comment


                            #14
                            Good luck whatever you decide. I have been on so many of the MS drugs. 30 infusions of Tysabri and it was the one I liked the most. The only reason I got off was because my dr decided to test me for the JCVirus and I was positive.
                            Take care
                            Laurie F

                            Comment


                              #15
                              Hi, Tortis,

                              There is no guarantee that you will need a wheelchair if you don't go on Ty. I think it was irresponsible of your doc to tell you that. Few people, in my experience go from using a cane and "wall surfing" to a wheelchair.

                              Regarding Tysabri, I tested + for JVC, and decided against it.I probably wouldn't take it if I were negative; any possibility of PML was enough to scare me away.

                              Comment

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