tysabri update after third infusion

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

tysabri update after third infusion

Postby noreen » Wed Jan 24, 2007 9:46 am

I had my third Tysabri infusion on Jan. 12 and I want to share the little things I've been noticing:
Once in a while, I take a few "normal" steps.
The numbness in my left hand comes and goes, but has nearly gone away.
I am not so tired.
The ringing in my right ear has lessened and has even gone away for a few seconds at a time.
Sometimes I can freely move my right leg.
I've even gone outside a few times!
My attitude is even more positive.
Noreen
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Postby Loobie » Wed Jan 24, 2007 12:44 pm

thanks for the update Noreen. It sounds like people are having a mixed bag of luck with Tysabri but I'm glad you are noticing some (positive) differences.

Take care,
Lew
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Postby noreen » Wed Jan 24, 2007 2:11 pm

Lew,
My hope is that this is not wishful thinking. Basically, I am wondering if others on Tysabri are experiencing little changes like these.
Noreen
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Postby renrank » Fri Jan 26, 2007 7:29 am

Noreen... I have had 2 treatments so far, and I'll be having my 3rd one next week. I have noticed subtle changes as well. I definitely have more energy now than I did before, and my numbness has changed. Now instead of the constant numbness, I am noticing that the feeling breaks through the numb and I actually feel heat coming through! Does that make any sense???? I know this illness seldom makes sense so I figured it's normal in the scope of things!!! I am glad you are having positive results!
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Postby noreen » Fri Jan 26, 2007 9:13 am

it totally makes sense. the changes are very subtle, but i think when you have an illness like ms, you notice every change, no matter how slight. i, too, feel a change in the numbness, but of course it is different for me. i feel these little electric-like charges, like the synapses are trying to make contact or somehow poke through. i feel these charges in my fingers and toes. plus, the overall numbness seems to be lessening. and as i mentioned before, my walking has improved. does any of this sound familiar to you?
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Postby noreen » Wed Jan 31, 2007 7:27 am

Lots of hits on this thread, but no one is posting. I'd really like to hear about your experiences with Tysabri. It helps all of us.
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Postby OregonMom » Sat Feb 03, 2007 9:35 am

Hi--

Haven't posted for a long time, but I'll have my first Ty infusion on February 5th at 2:00 pm. Quite nervous. Fingers crossed, praying to all possible deities... :wink:

Glad this forum is here. I'll post my experiences soon.
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Postby noreen » Sat Feb 03, 2007 11:42 am

Good luck Oregonmom. My fingers are crossed for you, too.
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Postby DenverCO » Mon Feb 05, 2007 11:43 am

I didn't notice any change after the first 2, but I had #3 four days ago and suddenly I feel 100% better. Noticably improved leg and back strength. I have used forearm crutches for a year, even in the house. Today I vacuumed and am staggering around the house without the crutches. I am so happy.
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Postby superman » Mon Feb 05, 2007 12:16 pm

Oh lucky you!
All these improvements make me looking forward to join the TysHappy team.
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Postby OregonMom » Tue Feb 06, 2007 5:07 pm

Okay! My first infusion went well.

Yesterday after my infusion I felt better than I'd felt in nearly two years. Y'all know that horrible fatigue...? The fatigue where you feel like someone is holding your head underwater and only letting you up to breathe half as often as everyone else...? It was GONE. Nuked. I was impressed. That boot-on-my-neck fatigue has been a constant companion since June of 2005.

But... my fatigue returned somewhat this morning. So maybe what I felt was the placebo effect. Still, it seemed like more than just that.

And I do feel good today, just a bit disappointed that I don't feel as superpowerful as yesterday. 8)

I will keep everyone updated for infusion #2, which I'm not NEARLY as nervous about.
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Postby retired_at_40_01 » Wed Feb 07, 2007 6:09 am

I keep reading about these small improvements. This is awesome! Improvements were not discussed at all when the FDA was deciding wheather to bring it back or not. Keep it up.

Pete
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Postby noreen » Wed Feb 07, 2007 7:05 am

I am also heartened by hearing about all these improvements. My doctor, who worked on the Tyabri studies at Georgetown, was very, very upbeat about this drug and could not wait to get me on it. I am gearing up for my fourth infusion Feb. 13 and am more enthused each time. I do have a question, I have gained about 15 pounds over the last year, due to immobility. And boy, do I ever feel it! I have been reading about this Exn'Flex device which is a passive/active based therapy for the legs and arms. (It is a small unit with pedals) It's quite expensive, and I'd love to hear if anyone has ever used it, and if so, is it worth it. Thanks.
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Ex n Flex

Postby lyndacarol » Wed Feb 07, 2007 4:49 pm

Noreen, I use this machine which sits in my livingroom. I am not terribly impressed with it. I don't think it is worth the cost, although I don't know of a good alternative.
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Postby superman » Thu Feb 08, 2007 4:27 am

Hi Noreen
instead of buying expensive that'll finish at the back your garage, just go to your local swimming pool.
for my own experience, it has a double good effect:
-it is anty inflamamtory when the pool is not too hot(under 23°C )
-it produces much natural (unlive ldn) endorphins that makes you feel happy.
and also it's good for your shape.
FFF
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