One Year on Tysabri, My Progress Report

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

One Year on Tysabri, My Progress Report

Postby msladyinca » Tue Nov 13, 2007 3:49 pm

Hi everyone, I haven't been here in a while, so I'll give you a brief update on my Tysabri progress.

I had my one year follow-up Tysabri appointment with my neurologist on 9/17... I am pleased to report that she was "delighted" with my progress (those were her words).

What she was most happy about is that she did not feel I was progressing in my disease, and that what I thought was a mild relapse in early May of this year...was really not a relapse at all but a pseudo-exacerbation when I was so upset over Mina's death (my kitty), soooooooo, no relapses in a year and no disease progression = WOOOHOOO! She also did not feel that a follow-up MRI was necessary, as she only saw good things when it came to my examination (strength, coordination, balance, etc.), and these were her findings, not my subjective opinions as relayed to her. She also said that if I wanted another MRI, she would order one, but she was trying to save me from the ordeal.

I guess because I live with this disease, and I struggle with its daily challenges, I initially did not think that she would be delighted. I am of course happy that I am able to continue with my Tysabri infusions, I just thought that she was going to be more disappointed that I hadn't made more significant improvements in my symptoms (actually I had been more disappointed than anyone, because I had only felt these minor improvements for about three weeks after my infusions - however never giving up hope and trying to maintain a positive attitude)...after that appointment, I'm flying! :P :P :P

She does want me to continue with my physical therapy exercises, and I wowed her with what I had accomplished to date (especially my improved strength). She does however want me to work on my "hip flexors" (I think that's what she called them) which enables the leg to lift the foot (aka vertically from a sitting position), and which enables one to walk. She wants my caregiver and I to be trained by the physical therapists in the exercises that will best help me in this area? We need to follow up with Kaiser in this regard.

She also said that of the Tysabri patients that she is aware of within her practice (that being the Kaiser facility where she is), she believes that I am doing better than most of those patients. When I asked her how many patients she was talking about, she said roughly 10 to 15, but she has not asked the different neurologists throughout Kaiser, as she mainly stays focused on me as her most challenging patient - LOL.

By the way, there are approximately 18,000 patients worldwide currently on Tysabri.

I had my 14th infusion on November 2nd, with my 15th infusion scheduled for November 30th... two infusions in one month - woooohoooooo! I'll try to make it back here more often, but it just seems like they're not enough hours in the day to accomplish everything I want to!

Have a great week everyone. Lauren :D
Feel free to visit my Blog and leave me a comment, I'd love to hear from you! :)

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group
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msladyinca
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Postby Lainie » Fri Nov 16, 2007 11:46 am

Congratulations on your progress - this is great news, and very inspiring to those of us who have just started Tysabri. My neurologist told me that Tysabri is not so much about getting better but rather about "freezing" my disease in time where it is now so that I don't get worse. Makes sense then, that your neuro was delighted with no progress of your disease. Congrats again!
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Postby msladyinca » Fri Nov 16, 2007 1:35 pm

Thanks so much Lainie,

Sometimes it is important to remember the Tysabri label which states in part: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations".

In my opinion, from studying/researching Antegren/Tysabri since 2000, I firmly believe that if the MS lesions have not left permanent damage, Tysabri is able to minimize the cascading effects of the inflammation cells which are bombarding the CNS, thereby allowing the body an opportunity to heal itself, which in turn can lead to symptom improvements.

Thanks again Lainie.

All my best to you, and good luck with your future infusions...Happy holidays!

Lauren :D
Feel free to visit my Blog and leave me a comment, I'd love to hear from you! :)

http://lauren-livingwithms-aolcomlglbgl ... gspot.com/

Co-owner of a MS Support Group
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msladyinca
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Posts: 104
Joined: Sun Aug 13, 2006 3:00 pm
Location: So. Calif.


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