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I Take Tysabri

My Life With Ms

By: MSMom
Written on May 13th, 2010
By: MSMom
Age: 41-45 , Female
1,241 people have read this story

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4 responses
  • 4katydid

    I was DX with RRMS in 1982 at age 25 with a 13 mo old, had 3 more kids, went to college to become a teacher at 38, surviving a very bad marriage all the while. Divorced in 98, remarried in 2000. I began Betaseron in 1995, In 2003 I had a relapse that didn't get better. I'd had only 3 in the 21 years before that and always got better after steroids. My doctor thought I had developed antibodies to Betaseron (without testing) and put me on Copaxone. 18 months later, still getting worse, he switched me to Rebif. In 2006, another Dr. said I had Secondary Progressive and put me on Novantrone for 4 infusions. I had to quit teaching in Dec 2007 due to increased progression and falls at work. Another Dr. tested me for Betaseron antibodies in 2010 and put me on Betaseron again. My Dr. now says Tysabri is much better at stopping progression than Betaseron, has done all the tests, including the one for the JC Virus, and everything is a go for Tysabri. When I get a little apprehensive about it, I stop and tell myself that I've got to do whatever I can to fight off the Monster with whatever is in my arsenal to do so. When I told my husband "Sometimes I feel like just giving up." He said "No, you don't, because you love me.". That, and my faith in God, keeps me going on days when I just don't know anymore. I've got to believe that something I try is going to give me just a little more quality of life to share with those whom I love, and who love me.

    Nov 4, 2012
    1 like
  • MSMom

    I was also nervous to start, but I just found my original "Touch" paperwork and confirmed that I've been using Tysabri for 5 years. PML has been in the back of my mind all those years, but faded in intensity over time. I guess I made up my mind that the stress of worrying probably wasn't good for my overall health and I believe it has been more beneficial to be on Tysabri than not. I think with the recent advent of the lab test for the JC Virus, it will be much easier to keep my mind at ease to be able to check on whether or not I am at risk for PML.
    I would say discuss your concerns with your neurologist, ask for the JC Virus lab test, and if you decide to go ahead with Tysabri, relax about it as much as possible about your choice because the extra tension and stress is not good.
    I hope that helps. :)!

    Sep 18, 2012
    1 like
  • Mrsalex

    Your post was a breathe of fresh air. I am very scared to start Tysabri, because of the brain infection. Do you ever think about it being a mom? Is there anything you can tell me that might ease my fears.

    Sep 17, 2012
    1 like
  • shelbyann2

    I am 34 with one child who keeps me very busy. I was diagnosed with Relapseing/Remitting MS at the age of 17. I am currently on Copaxone and my doctor wants me to try Tysabari, I am really nervous about the med. due to the side effects. I have a 6 year old to raise. Please give me your imput.

    Aug 22, 2012
    1 like