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Great results so far on Tysabri

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    Great results so far on Tysabri

    I was diagnosed Summer of 2017 with RRMS at age 42. I'm a surgeon and stopped operating for a few weeks with arm weakness and other crazy symptoms of my first relapse.

    Started Plegridy and was feeling better until Spring of 2018. I looked normal and was full time surgeon, but I did back off my normal surgery schedule some. I still struggled some with my self confidence that I needed to see patients and I worried if my MS would stay quiet and allow me to continue to operate.

    Spring of 2018, I started feeling the fatigue again, then intermittent spasticity on my right side, and then left eye optic neuritis started. It reached a peak on a Monday morning clinic. I was seeing a patient when the spasticity affected my neck muscles and I couldn't talk. The emotions flooded me and I was stuck in spasticity in my office chair.

    The MRI that week showed progression of brain lesions and 2 new lesions in cervical spine. My neurologist felt with the progression that we should move to new medicine. I'm JCV- and he recommended Tysabri. I missed about a month of work before symptoms improved that I could safely operate again.

    I've been on Tysabri since August 2018. I have zero side effects. Since October I've felt the best I have since my diagnosis. I now get my infusion on a Friday morning. I leave the infusion office, take off my IV bandaid, and am operating 30 minutes later.

    Did a follow-up MRI this week. No active and no new lesions on brain. Best news is both cervical lesions are absolutely gone. I have confidence again that I can continue to operate and help people for years to come with my MS diagnosis. Tysabri had been miraculous for me.

    #2
    What wonderful news!!

    MDvsMS,

    What a wonderful response youíve had to Tysabri! It is an excellent medication; I was on it for 54 infusions, and I never had a single side effect or problem on it.

    what an incredible gift of the universe to have regained your lost confidence and to be able to practice comfortably, secure in your skills and in control of your symptoms!

    So very happy for you!

    KimOp (Kimik1)

    Originally posted by MDvsMS View Post
    I was diagnosed Summer of 2017 with RRMS at age 42. I'm a surgeon and stopped operating for a few weeks with arm weakness and other crazy symptoms of my first relapse.

    Started Plegridy and was feeling better until Spring of 2018. I looked normal and was full time surgeon, but I did back off my normal surgery schedule some. I still struggled some with my self confidence that I needed to see patients and I worried if my MS would stay quiet and allow me to continue to operate.

    Spring of 2018, I started feeling the fatigue again, then intermittent spasticity on my right side, and then left eye optic neuritis started. It reached a peak on a Monday morning clinic. I was seeing a patient when the spasticity affected my neck muscles and I couldn't talk. The emotions flooded me and I was stuck in spasticity in my office chair.

    The MRI that week showed progression of brain lesions and 2 new lesions in cervical spine. My neurologist felt with the progression that we should move to new medicine. I'm JCV- and he recommended Tysabri. I missed about a month of work before symptoms improved that I could safely operate again.

    I've been on Tysabri since August 2018. I have zero side effects. Since October I've felt the best I have since my diagnosis. I now get my infusion on a Friday morning. I leave the infusion office, take off my IV bandaid, and am operating 30 minutes later.

    Did a follow-up MRI this week. No active and no new lesions on brain. Best news is both cervical lesions are absolutely gone. I have confidence again that I can continue to operate and help people for years to come with my MS diagnosis. Tysabri had been miraculous for me.

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      #3
      I have had over 100 infusions, and I believe it is the best medication out there. Iím glad youíve found your way to Tysabri and wish you continued success.

      Comment


        #4
        Hi MDvsMS, This is great to hear. I remembered and occasionally thought about your plegridy post because you had discussed your daughter helping with the injection.

        I hope that things continue to go great on natalizumab for you. I have done really well with it so far too. I hope that your patients continue to benefit from your work for years to come.
        All the best, ~G

        Comment


          #5
          Originally posted by MDvsMS View Post
          Did a follow-up MRI this week. No active and no new lesions on brain. Best news is both cervical lesions are absolutely gone. I have confidence again that I can continue to operate and help people for years to come with my MS diagnosis. Tysabri had been miraculous for me.
          MDvsMS ~

          Fantastic! Thanks for sharing, and giving others hope!

          Take Care
          PPMS for 22 years (dx 1998)
          ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

          Comment


            #6
            After I got my newest MRI results, I went to each of them (15, 14, 11, and 8) and told them the good news. They are smart girls, they live normal lives, but I know they worry about me.

            Two of them say they want to be doctors. Hopefully budding neurologist that will work on new treatments for MS for all of us.

            Comment


              #7
              Congrats! I am so glad you are back in the OR and doing well. It is a big win for you and your family.

              In my with 8th year on Tysabri - no new lesions since starting and still JCV-. I was also diagnosed at 42. I wish I went on Tysabri earlier but spent 5&1/2 years on other meds. Very grateful to be on Ty.

              Thanks for sharing your exciting news.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                Originally posted by MDvsMS View Post
                Hopefully budding neurologist...
                What a great legacy!
                All the best, ~G

                Comment


                  #9
                  This is awesome to read!
                  I've been on it since May 2018. In December my MRI did show more lesions but neuro believes they happened prior to Tysabri taking affect. I go back in March for another MRI to make sure.
                  I think it's a good med however the week i am due for my infusion i get very tired. The day before infusion i feel like a cell phone at 1% battery life. I'm willing to keep going though until it's no longer effective for me. I'm also JC + so my number is being monitored monthly.
                  Your story gives hope and assurance that life can be alright! Thank you.
                  Dx March 2018; possible first episode: August 2011
                  Tysabri May 2018-June 2019, Mayzent July 2019

                  Comment


                    #10
                    Posting this for those on Tysabri who are newer here and may not be aware of a great resource for information...

                    http://www.clinicspeak.com/understan...sk-on-tysabri/

                    Extending time between doses lowers your PML risk by 88% if you are JCV positive.

                    Also, you should know that contrast is NOT needed to identify PML on MRI BEFORE symptoms appear. Identifying PML early results in an approximately 10x better outcome. Thus, if you are on Tysabri and are JCV+ you may be getting an MRI frequently. However, it need not be with contrast.

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