Living With MS

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

Thursday, April 17, 2008

My Tysabri Diary...

Hi everyone, yesterday I returned home from my 20th Tysabri infusion (everything went fine of course). The first thing I did when I got online was to check my e-mails, and I had so many wonderful responses to a post that I made last night on a MS board/forum (I just posted the Élan press release from Monday regarding the data presented at the AAN-see additional links below)...

Most MS patients were absolutely thrilled to hear that there were approximately 26,000 patients on Tysabri therapy, no new cases of PML reported since Tysabri's reintroduction to 2006, and the "Disease-Free MS patients on Tysabri therapy" language in their press release, that WOWED a lot of them.

Just prior to my leaving for my infusion, I received a call from my neurologist that had the results of my recent MRIs taken just a couple of weeks ago (these were MRIs of my brai and cervical area, both with and without gadolinium dye).

MRI results: (I am paraphrasing here because I do not remember my doctor's exact words) She told me that she had my current MRI results in (she did not have the actual film, but she was reading from the report which was generated by the interpretation of the MRI results)...

She said said that the good news was I did not have any new lesions
from my recent MRIs which was compared to my Tysabri prerequisite MRI results taken just before I started Tysabri in October, 2006. Further, they were compared to my MRI results taken in mid-2005 which showed the two lesions (one on the right side of my brain and one in my cervical area), i.e., the ones that put me in this wheelchair & caused my hands to start curling when Tysabri was removed from the market) were not enhanced, that was a tremendous relief to me. Therefore, I have no active disease process going on when it comes to new relapses.

Some of the bad news was that my cervical area showed some atrophy (closing/shrinking of the spinal cord near the neck area), arthritic changes, and some early osteoporosis (mainly due to all of the steroids I've had over the years); and some brain atrophy as well. She reminded me that because I have had MS for 32 plus years, this is not unusual (disease progression), and as a matter of fact,
I should be bedridden and I am not! She attributes this (and so do I) to Tysabri slowing the disease process down!

She did say that
she was quite pleased and very upbeat regarding the findings of the MRI results, and definitely wants me to continue with my Tysabri therapy as obviously it is helping me tremendously, and this is not even mentioning the fact that Tysabri is reducing any probable additional costs which would have been incurred with hospitalizations, steroid use, etc.

This left me feeling both joyous and kind of sad at the same time, knowing that this medication is not only helping me, but it is helping others... and yet, if I had not had that severe relapse when Biogen took Tysabri off the market for over 18 months (which left me with two lesions in very critical areas of my brain and my cervical area), I might not be in the shape I am today... but I choose to dwell on the good news, and not the bad news because I can't change the past. I can rejoice that Tysabri is doing precisely what it was designed to do: "delay the accumulation of physical disability and reduce the frequency of clinical exacerbations."

And I get the added bonus of Tysabri slowing down my disease process!

Now here is the exciting news that is being released at the American Academy of Neurology this week going on in Chicago... is it any wonder that 26,000 patients are currently on Tysabri therapy? I highly suspect that many more MS patients are going to choose Tysabri as their choice of MS medication and stay with it until a cure is found for MS:

Biogen Idec and Elan Present New TYSABRI® Data at the 60th Annual Meeting of the American Academy of Neurology
  • Approximately 26,000 Patients on Commercial and Clinical Therapy Worldwide
  • Additional Analyses Show TYSABRI Significantly Increased the Proportion of Multiple Sclerosis (MS) Patients Who are Considered Disease Free for Over Two Years
These data suggest that neurologists and patients are increasingly choosing TYSABRI for the treatment of their disease. The significant clinical benefits are established and TYSABRI continues to offer the potential for compelling efficacy and hope for those patients living with MS," said Michael Panzara, MD, MPH, Vice President and Chief Medical Officer, Neurology Strategic Business Unit, Biogen Idec.

Positive outcomes for patients continue to support TYSABRI's strength as a valuable treatment for multiple sclerosis patients in more than 30 countries around the world. We are also excited that patients with Crohn's Disease are now enrolling in the TOUCH program and beginning to receive TYSABRI treatment in the U.S.," said Gordon Francis, MD, Senior Vice President, Global Clinical Development, Elan.

The full article can be found at:

Also, just released yesterday was the following:

16 April 2008

Data Presented at the 60th Annual Meeting of the American Academy of Neurology Offers Additional Support for Plasma Exchange as a Potential Tool to Accelerate TYSABRI® Removal

The full article can be found at:

It is my understanding that all new data is being released about Tysabri this week at the AAN conference, and when more is being released, I will try to have it posted here.

It is way past my dinner time now, so I will try to post more information tomorrow. Have a great evening everyone!

Love, Lauren :)

PS: My friend Chuck dropped by today and we had a very nice visit, he brought Noël some goodies (a bunch of busyballs & little mice-stuffed of course) to play with, trimmed all of her nails, even surprised me with a box of chocolate covered cherries, my favorites! Life is good - :)


  • At 5:16 PM, Blogger Vic said…

    Thanks for the great update, Lauren.

    Tysabri is working very well for many people!


  • At 1:10 PM, Anonymous Anonymous said…

    I am so happy for you. Your positive attitude only compliments Tysabri. Thanks!

  • At 10:04 PM, Blogger Blinders Off said…

    Thanks for the information you provided me Lauren. I will be posting how I do on Tysabri once I start.

    I arrived at my decision on my own without coercion, I am at peace with it.


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