I'm starting Ty on February 13 unless they get a cancellation. I hope someone cancels so I can get in sooner. My infusion center is at my MS neuro's office. I think they need to expand. Wish me luck! I'm very optimistic about Ty. My hopes are high.

I'm gonna start posting about my infusions and keep a log going right after my first one.

I had a reaction during my second infusion. Mostly it was difficulty breathing. As usual (when it comes to me) the diagnosis of the problem was confusing. I had one of the worst chest colds ever a couple weeks before, but I was just about all better. However, I heard the word "asthma" applied to my condition for the first time ever. 53 years old and this comes out of nowhere.
Anyway, it seems that my body decided to have it's first real asthma attack during the infusion. So was it a coincidence or did the Ty somehow trigger the attack or was it the Ty alone? Who knows? I do know that it was scary as hell. Now that I have experienced a few, I know what to expect so it's not as bad. So I have been getting benadryl and steroids before my infusion. Talk about a roller coaster! The benadryl brings you down and while the steroids are pumping you up. They really love steroids at my neuro.
I've had a few infusions since and they are better though not trouble free.
I think I get an MRI soon so I'll get a chance to see if this stuff is working at least as far as new lesions.

hi, i was just wondering how the tysabri is working for you. like with changes and with side effects.

i am suppose to make a decision between tysabri and copaxon and i dont know what to do so i am looking for info.

I have to say that the pml really scares me. did you feel this?

Thanks

Okay, I filled out my TOUCH papers today. I just had an MRI and bloodwork, so that shouldn't hold me up. My nurse said she'd fax off the stuff on Monday, and hopefully be approved sometime next week by TOUCH. Then they'll work on my insurance.

I just hope this is the right move!

After a year on Avonex, more lesions.

After the next year on Rebif, no new lesions, but I itch all the time, am tired all the time, and get frequent head-aches.

Not a lot of MS symptoms. Never had steroids. Just a tingly left hand, weird left side flutters (that have since passed) and lesions on my brain!

Hi 4boysmom!

Good luck! Let us know when you start!

Hi CJohnston,

If you go back to page 1 and read through this thread from the beginning, you can read how people are doing on Tysabri. Everyone's different and there's a lot there from each side of the coin.

As for PML, over 24,000 people are on Tysabri now and no cases of PML have been seen in Tysabri given alone. Only you can decide what your risk tolerance is.

Read the thread and then ask specific questions, there's a lot of folks who can help answer them!

I go for my first infusion on the 30th, and I was just wondering from everyone. How many patients are in your clinic. For myself I am going to be the twelvth patient.

Glad to hear that you are scheduled for your first infusion!

I can't speak for anyone else. I go to a 25 bed hospital that has an
infusion center. I was the only one for my first 7 infusions.
Now there are two of us!

I go to a standard Neuro office. They have 70 on TY. They also give infusions for headaches... 3 large comfy chairs in a very small room. The others came and went as theirs was for 30 min - mine 2hrs. No problem at all. Nice chat or read/sleep time. Very relaxed.

I know my neuro has 16 patients on Ty, and there are other neuros in my town. He said most are going to the infusion center I am going to, not the hospital that is the other place that does them.

They only do Ty three days a week, M-W-F, so I'm limited to those three days. I did Wednesday the first time. Everything going well so far!