Hi,

I'm geting my first Tysabri infusion tomorrow. I'm not terribly disabled, just numb fingers and general forgetfulness, but the fatigue is really hampering my life. Is anyone else out there currently on Tysabri? I'd love to share experiences.

I'll try to post again tomorrow night or the next day to let you all know how it went.

Katty

Hi, Katty! Welcome to our scary little bunch of MSfits!

There are some who are currentlyon Ty, I'm working on it with my stubborn ins. co.

I'm glad you found us and do let us know how it went for you.

Hi Katty, nice to meet you. I hope some people chime in on Tysabri for you.

Please do let us know how you are doing on it. I wish you the best of luck, that TY will work for you.

Hi Katty and welcome!!

I am on Tysabri. I will have my 5th infusion in September. So far I don't have anything dramatic to report.

I feel as if my stiffness has lessened. My eyesight has improved because my eye muscles seem to have stabilized. My fatigue has lessened. I FEEL better than I did. I do more than I could before Tysabri.


So far so good, no adverse reactions. I'd say Tysabri is working for me.

I am careful in what I post because I don't want to give promise to people who don't get the same results as I do. Before I post that something is better I make sure it isn't related to anything else I have done.

I hope Tysabri works as well for you!!

Hi Katty and Welcome! Good luck on your TY infusion. I have a friend who is doing very well on it and is just going in for #12 today.

Hi Katty
Welcome, welcome. Looking forward to hear how Ty may be working for you. Jump in anywhere, and hope you enjoy the group as much as I do.

Hi all,

Thanks for your replies. I got my Tysabri infusion yesterday. I was really nervous. I stopped on my way to the infusion center to get some Tylenol and Benadryl. I'd heard that taking them can help prevent side efects. I took them about an hour before the infusion started.

The infusion took place at the cancer infusion center. There were two women there getting platlete infusions and a couple getting who knows what and there was another woman there who'd just finished her fifth Tysabri infusion, which was a major coincidence, as there are only four or five people in the whole county getting Tysabri.
(Big county, lots of people, lots of MS.)

The nurse hooked me up to the IV, chatting the whole time, probably to make me more comfortable. I tell you, I was waiting for some kind of nasty side effects--what I experienced was...well, nothing. I just sat there for an hour with a Steven King novel and then sat there for another hour after the infusion was done, and felt absolutely the same.

I still feel the same. The only difference I've noticed is that it's late afternoon and I still have energy to write this. I don't know if the energy is simple elation, or the placebo effect, or the Tysabri, but I'll take what I can get.

The other Tysabri woman at the infusion center reports no side effects and no particular change in her existing symptons. Still, if all I get out of this, is a halt to the relapses, and a tiny bit more energy, I'll be very happy.


I'll report back in a few days to let you know how things progress.

Katty

Sounds great, so far, Katty. It's good that you dont expect too much. Although some report feeling stronger and better, most don't notice too much of a change.

I hope it stops your progression right in it's tracks.

Hi Katty,

I had my 4th Tysabri infusion on August 22nd, and my next is on the 19th of this month.

I might feel a very slight improvement in energy... I don't feel worse! No new symptoms since I started! And that's a plus!

If this medicine can keep us stable, it will be wonderful. I hope you have good results.

I have not posted in months. Just read Katty's post.

Update: Infusion #11 coming 9-5. Things are improved from where I was before Ty. Diagnosed in '84 with chronic progressive. Balance has never gotten any better. Still go to the gym. Strength is good as well as the treadmill. Never improved after my 1st infusion, but did not get worse. Had an awesome effect after #1. Not a typical response to TY.

My doc is doing a blood draw to test for antibody buildup after infusion #12. Has anybody had this done?

Pete