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    My doc wants me to try Tysabri

    I am very scared. My neuro wants me to try Tysabri and I am terrified! He wants me to give it a shot before I run off trying HSCT. He feels this is less risky and he also stated that I could get my surgery I wanted whilst on Tysabri vs waiting a year after getting HSCT.

    He agreed that I could start off with a half dose because I didn't feel comfortable going with a full dose first time.

    I am allergic to everything so they said I could take a benadryl and 2 tyelnol before I go in. Have any of you had any bad reactions? I have been sifting through this forum and found one person didn't like it all, but couldnt find anything on reactions.
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    I personally know one of the HSCT patients. She had good results, but the procedure was not a walk in the park. It did not reverse any damage, but it has slowed her progression. She has stated she would do it again. My personal opinion is HSCT is not quite where it should be yet.

    As far as TY...I too have had some severe allergies to Meds to include anaphylactic shock. One has not lived until they have suddenly stopped breathing while still conscious. Thankfully for me I was in a hospital when it happened, and the first thing they did was knock me out...quickly.

    My TY infusion is at a Cancer Center. They actually infuse me with Benadryl prior to the Tysabri...adds an additional 30 minutes to the infusion time. Your doctor can order this. And if you have a prior record of medication allergies, I can understand your hesitation. Most serious allergic reactions occur within a couple of hours of the infusion, if not immediately and infusion center personnel are trained to respond appropriately.

    TY is really scary. For me, because of my situation, MS is scarier. I just canceled my infusion for tomorrow because I have been running a fever. I am going in next Friday instead. I made that decision. No one else. I would not have been able to sleep tonight otherwise.

    Do what is right for you. Go with your gut...it will tell you what to do.
    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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      #3
      I start Ty this Monday. Its my first med. I'm and nervous too.

      So far I've heard good things on here. It kind of puts you into remission sometimes. Of course we all worry about the bad, I can deal with more fatigue, more nausea etc. But we all know the worst.

      I'll probably post how it went next week when I can
      Sx start May '13 | Dx'd Dec '13 | Tysabri Feb '14 [Neuro's call&saved my life]
      Just because we don't feel flesh, doesn't mean we don't fear death

      Comment


        #4
        Hi Katje,

        I don't have the medical allergies, but no I was still scared to start Ty. Inoe am sorry that I ddidn't start it sooner. I have had some progression on it, but it has been slower than when on other meds. Neuro thinks this may be more a factor of 13 years of undiagnosed and untreated MS. I have felt better on Ty than Avonex or Rebif.

        Keep talking about your fears with your neuro and make sure he addresses them. Good luck with your decision.
        Kathy
        DX 01/06, currently on Tysabri

        Comment


          #5
          Just got dose 38 of Tysabri

          I was scared to try Tysabri. Now looking back, if I would have started when the Dr recommended it, I would have saved about 3 points on the disability scale. Which is a ton. I have had very few side effects. And those are just I couldnt sleep a couple of nights of the infusion (which could have been anything) and sometimes they couldnt get me on the first stick. Trust your doctor. Try it. Give it a while to see if it works. I havent had an attack since I started on it. I was having 2 attacks a year. The last one almost took me out completely. In my eyes, its the best we have available.

          Good luck!



          Originally posted by Katje View Post
          I am very scared. My neuro wants me to try Tysabri and I am terrified! He wants me to give it a shot before I run off trying HSCT. He feels this is less risky and he also stated that I could get my surgery I wanted whilst on Tysabri vs waiting a year after getting HSCT.

          He agreed that I could start off with a half dose because I didn't feel comfortable going with a full dose first time.

          I am allergic to everything so they said I could take a benadryl and 2 tyelnol before I go in. Have any of you had any bad reactions? I have been sifting through this forum and found one person didn't like it all, but couldnt find anything on reactions.

          Comment


            #6
            I would really give it a try! The PML thing sounds scary but you can always get tested for the virus and if you're negative well than that's less stress for you about that!

            When I got my diagnosis I tried Avonex for 6 months and got so many relapses, than switched to Tysabri and nothing no more... My doc was positive only Tysabri would help and luckily it does!

            As far as side effects nothing major really, headaches, UTI's, low blood pressure etc. Comparing with Avonex, Tysabri is such a breeze as far as side effects really.

            Comment


              #7
              Have to do tecfidera instead because I am in line for HSCT and not allowed to be on Tysabri. The hope is, hopefully no more MS ever. We'll see. :/
              Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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