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    Want Tysabri experience feedback

    Being diagnosed in 1983, and having only tried Beta Seron from 1992-2002, this is the first thing I've needed or has been recommended. Dr. Jeffery is recommending Tysabri because a wheelchair seems very close. After 30 years with MS, I just felt the first symptom on my left side. Up until November 2014 only my right side has been effected. So, now I'm looking for something that will stop forward progress and new symptoms AND give me another ten years withOUT a wheelchair. What can you all tell me after your experience?

    #2
    I was dx in 1988. First med Copaxone in 2004, on it for 2 1/2 years and many lesions and some disability later I went on Tysabri. Progression halted, MRIs better and no new or active lesions. I am very grateful to Tysabri and can't imagine what would have happened to me if I hadn't been offered Ty.

    This is my Tysabri experience
    Linda

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      #3
      Tysabri has been the only medication I have ever been on, and I am eternally grateful to my neurologist for recommending it. I just completed my 58th infusion, and I am confident Ty is holding my MS at bay; all my MRI's show stability. I have no new lesions and no enhancing lesions. No, I still am progressing as I continue to deal with damage that was done before Tysabri. However, at 62 almost 63, I am also dealing with the normal aging process.

      The best thing about Ty is absolutely no side effects: none, nada, ziltch! Day 1 is just like day 28. Tysabri holds my MS at bay, and I live my life. This is my Tysabri experience.

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        #4
        My Ty experience over +2yrs was mixed. Two of three sx's on my wish list resolved. One was chronic insomnia, the other bowel incontinence, both I had for 10yrs. Life changing improvements.

        The bad news is that I had significient mobility progression after 2yrs, resulting in stooped posture and shuffled gait, aka apraxia of gait and trunk movement. Apraxia sx are associated with frontal lobe lesions.

        Full disclosure, I should mention that in year one I stopped Ty infusions for about 3 months (doc office mix up in approval/paperwork, I was billed 100% for Ty), as a result of interrupting Ty infusions I experienced MS Rebound associated with stopping Ty, and first MRI changes since my MS dx ten years earlier.

        It's the only DMT that I experienced any type of recovery.

        Good luck

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          #5
          It didn't work for me.

          I was taken off of it mostly because of the side effects. I felt absolutley terrible. The fatigue was worse than usual, than added with urinary tract infections, sinus and other respitory infections, awful headaches and nausea, I had to get off of it. Besides all that, I never had any improvement nor did my MS slow down on Tysarbi. I've been on Copaxone ever since and doing much better. I'm not telling you this to dash your hopes, but just to tell you my experience. I know that it works for so many (that's why I tried it) and I hope that if you decide on it, that it will work for you too.

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            #6
            TY is the best thing that ever happened to me. Long story short...my EDSS fell 3 points. What an improvement I have made and just about all symptoms improved.

            Full Disclosure: I have a type of drug-induced Anemia that does cause its own problems, and I must be continually monitored. It is being caused by TY.

            Additionally, I did have a break through flare on TY...at Month 6.

            I know that when I come off TY, I will revert back to what I was unless I immediately do something else. My Medical Team and I are already discussing what my next step will be...as of right now it looks like Rituxan.

            Please note that none of the DMDs work for everyone, to include TY. I hope you are successful with your TY journey.
            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

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              #7
              Tysabri

              Hello, I am about to get my forth TY infusion and had no issues with it at all. I was dx back in 2011 and started on Copaxone which did not work and gave me side effects(shakes,chills,back pain). MRI's got worse. Then went on the INF's for while which I was fine with but my MRI's continued to get worse that's when the dr said it's time for TY. The only weird thing is that for now on he only wants MRI's of the brain only. For Rituxan I know that's for RA patients. It works great for people with RA and MS. Just not approved in the U.S for MS yet. Rituxan works on the B-cells while MS is T-cells. That's probably why it can't get approved. Anyway I am happy with me experience so far on TY. Wish everybody the best.

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                #8
                Worked great for me

                My name is David, diagnosed in 2011 and been on Tysabri for 2 years (24 infusions). Was sad after #24 because I tested positive for the JC virus and my Neurologist took me off because of the risk for PML. Wish P could have stayed on it.

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                  #9
                  Tysabri and positive JVC

                  I am on my third infusion, my jvc were positive before I started. The doctor just told me he will monitor them and keep on the infusion. I have been on most everything else. Been dx for six years.

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                    #10
                    TY

                    Originally posted by dsyoji View Post
                    My name is David, diagnosed in 2011 and been on Tysabri for 2 years (24 infusions). Was sad after #24 because I tested positive for the JC virus and my Neurologist took me off because of the risk for PML. Wish P could have stayed on it.
                    Hello, sorry for the late response. So how have you been since you discontinued Ty? Hope things are okay.

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                      #11
                      7 months in

                      very few side effects, feeling pretty good. I am JC positive so my Dr. has told me I can only stay on for 24 months. So far, so good.

                      Best of luck to you.

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                        #12
                        I have been on TY since December 2012. Used Rebif before that. Love that I don't have to take medicine to take medicine with TY. So far my tests for JC have been negative. If I turn up positive I am switching. I do not know what to. The Dr that put me on TY said that I could not do the high dose interferons anymore. I guess that as long as I can get the brand Copazone it will have to be that. I mean Tecfidera has the PML risk as well and I do not know about the other oral treatments. They scare me almost as much as the TY.

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                          #13
                          over30years,
                          are you there ? Would like to know your Tysabri experience. Please come back !
                          Linda

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