Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Saturday, May 26, 2012

My Tysabri Diary... 

I received very sad and disturbing news from my neurologist..., he ordered a JC virus blood test to see if I carried the JC virus antibodies... well it came back positive that I carried the JC virus antibodies and he advised me that none of his Tysabri patients that were JC virus positive were on Tysabri, he was not willing to take the risk of me developing PML, and that he was discontinuing my infusions.  He wanted to put me back on Avonex or Copaxone (both of which I was on  before and both did not work for me) or he wanted me to try Rebif or Betaseron.  When I told him no to all that  he suggested, advising him that interferons and glatimer acetate do not work for me, he suggested that I receive monthly infusions of Solumedrol (are you kidding me?).

When I started arguing with him that he was not willing to risk me developing PML (we started arguing about monitoring any new symptoms I might develop, checking my CD count, plasmapheresis exchange) but was willing to risk putting me on pack on interferons, glatimer acetate or suffer the side effects of monthly steroids, I told him absolutely not and that I wanted a second opinion.

All of this was very upsetting to me because I worked so hard along with other MS patients to get the FDA to reapprove Tysabri, struggled so much with Kaiser to get back on Tysabri to begin with, and more than likely none of their neurologists would be willing to continue Tysabri infusions if their MS patients were carrying JC virus antibodies, then to be left with no treatment options that work for me, and hope that I can find a numerologist within their network that will put me back on Tysabri before I have another bad relapse, I feel like I'm back at square one all over again.

So I won't be posting again unless I get some good news..., it has been wonderful knowing all of you and I will never forget your friendships and the support you have shown me over the years.  From the bottom of my heart, I will miss you all.

Take care everyone --

Love, Lauren