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Old 03-12-2008, 12:15 PM #171
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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
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Old 03-12-2008, 12:17 PM #172
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Good Luck Punk, I hope all goes smoothly for you..
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Old 03-12-2008, 03:45 PM #173
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Originally Posted by PunkDizzle View Post
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!
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diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Old 03-12-2008, 03:49 PM #174
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Quote:
Originally Posted by Victor H View Post
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?
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I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


.
I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
.

Negative for JC virus antibodies!
.

I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
.
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Old 03-12-2008, 05:20 PM #175
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Hey Vic? Nice charts, but what's going on there? Are you having a relapse?
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
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Old 03-12-2008, 08:10 PM #176
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Quote:
Originally Posted by Riverwild View Post
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!

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..
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Old 03-13-2008, 05:19 AM #177
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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.
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Old 03-13-2008, 09:19 AM #178
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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.

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.
Last edited by barb02; 03-13-2008 at 11:24 AM. Reason: typos
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Old 03-13-2008, 10:20 AM #179
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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.
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Old 03-13-2008, 07:26 PM #180
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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. ~Sheena~
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