Living With MS

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

Friday, January 21, 2011




My Tysabri Diary...

I completed my 56th Tysabri infusion on Tuesday, 1/18, and all went well as usual. My small infusion center now has 13 Tysabri patients, and I got to visit with one of them on Tuesday (she was quite the chatterbox -heehee). I knew her neurologist and she mentioned that she has been on Tysabri for two years and her neurologist mentioned to her that there is an increased risk of developing PML after the two-year mark. I told her if she hasn't been tested for carrying the JC virus, choosing to go off of Tysabri was premature in my opinion. I explained to her that if she does not carry the dormant JC virus, she cannot develop PML because the activated and untreated JC virus is what causes PML. She said "oh I'm so glad you explained that to me!" She also mentioned that her doctor did not feel she needed to go off of Tysabri therapy, she just felt she had the obligation to mention this to her and discuss it with the patient if she so desired.

She then asked me if I knew how Tysabri worked, and I said "yes, as a matter of fact I do know how Tysabri works" (heehee) and I explained that to her as well - I also mentioned that I had the opportunity to meet the brilliant Dr. Ted Yednock (the doctor who discovered Tysabri.

She is one of the lucky MS patients because Tysabri is working wonders for her (she has had MS for 10 years, but most of her prior damage from relapses had not become permanent yet). She was once in a wheelchair, but after 8 infusions of Tysabri and a lot of physical therapy, she no longer uses it, and she only uses a cane when she has to walk really long distances. She still has numb feet, but the neural connection from her brain to her legs has been restored, she just has to be careful when walking because of her numb feet. Pretty miraculous, huh? She told me that she has seen slow improvements in her optic neuritis and cognitive function. Almost back to 75% or so, but she's happy with the improvement she's showing (she was previously on Avonex, Betaseron, Rebif, and Copaxone - none of which really helped or stop/slow the disease process down).

Before I knew it, my time was up and I had to get going, but I'll see her again next month. I'm still a little tired, so I am going to sign off now..., have a great weekend everyone!

((((hugs)))) Love, Lauren :)

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