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Old 02-17-2009, 03:17 AM #11
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Riverwild Riverwild is offline
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
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Quote:
Originally Posted by 4boysmom View Post
So a question for those of you on Ty. Anyone have follow-up MRIs that showed more lesions?

My DH would just like to have a baseline to go from. The neuro wouldn't give him a definite answer for the question is two lesions too many? He prefaced it by saying that he realizes any lesion is too many.

But he wanted to know do people on Ty have on average, no lesions, 2 or less lesions, or more than that typically after being on it for a year.

I was only on it for 10 months, so I realize the 2 lesions could have come in the transition phase, and I'm waiting for my NABs test.

But it would help my DH to know if others have had more than 2, or if I'm just special!!
I had an MRI during the month before I started, one at 6 months and one at 18 months.

The first showed "numerous lesions, many enhancing". I did a course of oral steroids in the month previous to starting Tysabri because of that MRI. (orals because I was away for three weeks before my infusion and had to be able to take the steroids while away, I think it was a total of 3600 mg in three days)

MRI at 6 months showed no new lesions, no enhancing lesions and a sizable reduction in the size of several lesions and some lesions resolved as in gone.

MRI at 18 months showed stability, no new lesions, no enhancing lesions and further reduction in size of large lesions.

I should be due for another one pretty soon here since I am up for # 24. So far, so good.

Quote:
Originally Posted by Natalie8 View Post
I had infusion #8 this morning (after having to wait 2 additional weeks since I had a cold with cough and fever). I was worried that going 6 weeks was too long but it did not seem to matter.

My usual time is 2 pm but today I had to arrive at 8 am. Since I'm a night owl that was painful! I fell asleep for almost all of it. I then went and ran some errands, came home, lay down for a nap at 12:30 and fell asleep until 6:30!!! I'm awake now and feel great. No residual side effects like after some of the other infusions.

This really would be the most absolute perfect drug if there was no PML risk. But even so, I'm willing to take the risk. I have quality of life, I can do my job and function, I don't have to bother with shots, I don't feel sick from the meds, MS doesn't dominate my life because of the Ty., and my 6th month MRI showed nothing had changed.

4boysmom --- I haven't been on it for a year so can't answer your question. Good luck with everything.
Glad to hear it all went well Natalie, even if it WAS at an ungodly hour of the day! (I work nights so I know just how you felt!)
I also agree with what you said about Tysabri. It has allowed me a quality of life that I didn't have before and wouldn't have now, and at this point the only downside is the PML risk, but I don't worry about it. I'm too busy living life!

Quote:
Originally Posted by ewizabeth View Post
4boysmom,

I've had a couple of MRI's and both have been clear. I don't tend to get a lot of brain lesions though. I hope that helps!

Natalie,

I agree with your viewpoints regarding Tysabri.

I get my next infusion on Wednesday morning, #23 I think.
Yes my Tysabri Twin! It is # 23!
( Wiz and I started within a week or two of each other! She's just a lil behind!)
__________________
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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4boysmom (02-17-2009), ewizabeth (02-17-2009), Natalie8 (02-17-2009)
 

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