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Beemergirl 08/08/2011

I had my first Tysabri infusion on Saturday. I was outwardly calm but, inwardly nervous. It could not have went better. The RN was wonderful. She was very knowledgeable, kind, caring and competent. I have really bad veins and historically it has taken others two, three or four pokes before finding a suitable vein, but this woman did it on the first try and with ease. The infusion itself was uneventful, my blood pressure remained the same throughout and I felt absolutely nothing. I had the infusion at 1000AM on Saturday morning...and throughout the rest of the day and since then actually, I feel stronger. How could this be, I wonder? This drug is not designed to do such things. Placebo effect? I don't know...but I am definitely stronger. My right side is the weaker side...and I can really feel it in my right hand and right arm but also in general all over - I AM stronger. I was so worried that I would experience side effects and feel worse - but to actually feel better? Well, that is more than I bargained for.....I'll take it. Finally something good. :)

kyblu 08/08/2011

This is great news! I am scheduled for my first Tysabri infusion this Thursday and have been a bit nervous. Your post eases my mind so thank you. I hope it continues to go well for you!

lsj1079 08/08/2011

Kyblu is right, this is great news...and comforting to me, as well. I go in for my first infusion tomorrow afternoon.

lsj1079 08/08/2011

Forgot to ask...did you get tired afterwards or have any other side effects from the treatment?

Again, so glad things went well and hope they continue.

Punky1 08/08/2011

I have been on TY since 2006. I have never had a side effect yet. Just to let you know but don't want to get everyone's hopes up but there are some that TY gets them out of a wheelchair or helps there symptoms Improve greatly. I do hope all of you see improvement. Be sure to drink lots of water so your veins are an easier stick. Good luck to all of you it is so much better than all of the shots. Please check back in I would love to hear about your experience.

lchoppel 08/09/2011

My doctor told me that most Ty patients do feel stronger right after the infusion, and the closer it gets to the new infusion date, the medication starts to wear off, and the patient gets tired.

For me, I would come home and sleep 36 hours straight after my infusion. This lasted about 10 months, then all of a sudden, my energy level came back to right after the infusion like the doctor said.

I've too heard of folks in wheelchairs on Ty all of a sudden getting out of them, or other such success stories. For me, everything is the same but my MRI's have improved. No new lesions, and shrinkage of old lesions thanks to Ty.

Beemergirl 08/09/2011

lsj1079 - I had absolutely no negative side effects. I was amazed really since I was so sensitive to avonex and rebif......I can't wait until my next infusion! :)

lsj1079 08/09/2011

Thanks for the encouragement and insights. I'm thankful that so many have had great experiences with Ty. Thanks for sharing your stories.
The nurse told me to drink lots of water, so that is in process.--thanks Punky1!
I'll check back and let you know how things go this afternoon. A bit nervous, but not as much after hearing from the good folks here at DS.
@Beemergirl--so glad you had no side effects. I'm hoping for a good experience, too. Thanks!

Beemergirl 08/09/2011

Best of luck lsj1079! Do let us know how you make out....

deleted_user 08/09/2011

Hi all! This is such good news for everyone I really hope that it continues to help you. I am currently on Rebiff and hate it. I've tried Copaxone too but the site reactions were too much for me. My doctors have considered Tysabri for me but will not start me until I have the 2nd child that I want. Just curious do any of you have kids or plan to in the future. I have heard mixed things with regards to kids after infusion.

Thanks!

Beemergirl 08/09/2011

I do not have children and do not plan on having children.

lsj1079 08/10/2011

My infusion went very well yesterday! Great nurse, a room full of wonderful new friends(that were also very helpful and supportive) and learned a great deal. I had some lightheadedness, but that was it. I had trouble going to sleep last night, but I'm not sure what that was. My husband was able to come in with me and I think he learned a great deal, too. He also got alot of "pats on the back" for being a good supporter. All in all, it was a good day. Even got dinner out afterwards!
Thanks, everyone!

deleted_user 08/11/2011

I just had my 43rd infusion of Tysabri a couple of weeks ago and I am still as happy today with it as I was in the beginning. It took about 6 months before I could really tell the full effect of the drug but I even after a couple I noticed an improvement. My energy increased, my walking improved, and even my memory wasn't as scattered as before. The best thing was that I wasn't living from relapse to relapse and my mri's were proof that the drug was working, not that I needed any more proof! lol I wish everyone could have the same great results that I have had.

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