NeuroTalk Support Groups - Tysabri Information & Check In

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Multiple Sclerosis (https://www.neurotalk.org/multiple-sclerosis/)

- - Tysabri Information & Check In (https://www.neurotalk.org/multiple-sclerosis/37891-tysabri-information-check.html)

Victor H

03-12-2008 12:15 PM

1 Attachment(s)

Here is my Tysabri update after infusion #9. My graphs show that I have had 10 infusions, but that is because I made a mistake in selecting "0" as a start point rather than 1.

-Vic

SallyC

03-12-2008 12:17 PM

Good Luck Punk, I hope all goes smoothly for you..:hug:

Riverwild

03-12-2008 03:45 PM

Quote:

Originally Posted by PunkDizzle (Post 235188)

i was approved for TY a while ago just had to get my "before" MRI.. done with that now.. getting my first infusion on the 31st of this month.. id be lying if i said i wasn't just a little worried about the 1st infusion.. guess its just the "unknown" and all that stuff.. oh well.

Glad to hear that you are approved and everything's done! Were you on another DMD, and is that why you had the long wait after approval?

I hope your first infusion goes well, along with the ones that follow! Please let us know how it goes for you!:)

Riverwild

03-12-2008 03:49 PM

Quote:

Originally Posted by Victor H (Post 235263)

Here is my Tysabri update after infusion #9. My graphs show that I have had 10 infusions, but that is because I made a mistake in selecting "0" as a start point rather than 1.

-Vic

Hey Vic? Nice charts, but what's going on there? Are you having a relapse? :confused:

Victor H

03-12-2008 05:20 PM

Quote:

Originally Posted by Riverwild (Post 235409)

Hey Vic? Nice charts, but what's going on there? Are you having a relapse? :confused:

RW,

I don't think that it is an exacerbation, since it has been taking a while to get to the point where degradation is more pronounced. It may be the development of antibodies, the monthly UTI's, or stress-related (over-worked)...or a combination of all of them.

My neurologist and I agree to stick with it until N=25, at which time I can draw some statistical conclusions. Prior to that, it may just be speculation about what is going on with me and Tysabri.

I am more than happy to give it more time.

-Vic

PunkDizzle

03-12-2008 08:10 PM

Quote:

Originally Posted by Riverwild (Post 235405)

i was on rebif but stopped it on the 3rd of Jan... i was approved pretty quick for the TY it was just the testing my neuro wanted before my first infusion (blood work,MRI) that took forever.. i don't know how much blood they took but just when i thought i was done.. i would get a call saying "hey lets test you for this also just to be safe" better safe then sorry i guess.. but it did get old pretty quick..

Jodylee

03-13-2008 05:19 AM

I had my second Ty infusion yesterday. No reactions, but for some reason my neuro is now having everyone takeTylenol and Claritin before their infusions. I'm wondering if more of his patients are having reactions. Before my first dose, I asked him if I should premedicate and he said no. He also said then that too few of his Ty users had reactions to merit premedication. I'll ask him about this at my next visit. It seems a bit odd to me.

barb02

03-13-2008 09:19 AM

Glad to hear that it went smoothly for you. Also I just wanted to know that I have been thinking about you and your family. You have been missed. :hug:

I would also be interested in hearing your neur's response since I am one of those having reactions. Hopefully, premedicating with benadryl iv will work for me.

tovaxin_lab_rat

03-13-2008 10:20 AM

Just an FYI for those of you who were not around for the initial release of Ty, premedicating with tylenol and benadryl was part of the original protocol. I am wondering since it was on the market for such a short time (3 months), they didn't see any reactions. Now that's it been on the market for a longer period, they've seen these reactions and are going back to the original protocol. Just my thoughts on this...

Glad you are doing better Joelle and have had your second infusion.

sheena

03-13-2008 07:26 PM

I'm in with my infusion appointment set at last. I go in 3-18 at 10am for my first. I thought it would be another 2-3 weeks b4 infusion, but my main nuero had a fit at the infusion neuro center and I'm in Tues. Now, I just pray nothing goes wrong and that ty works for me. I'll keep you updated on how things go. :hug: ~Sheena~ :hug:

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