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Tysabri Information and Check In part 2

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Old 01-04-2011, 08:08 PM #1
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I know this is an up thread and it should be, but I know you will pray for Angela, who was put in John Hopkin for a new experimental drug treatment, for PML.

I'm praying it works and she gets better.

Her orig PML video....
http://www.youtube.com/watch?v=X4aOG2UJDFA
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Last edited by SallyC; 01-05-2011 at 03:08 PM.
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Old 01-05-2011, 03:42 PM #2
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I was looking at the chefarzfrau site. I've had a question about a couple of the pml cases statistics and decided to throw it out to see if anyone has an answer. There are 2 cases in the U.S. both July 2010, one had 57 infusions the other 59. Tysabri was put back on the market July 2006, getting an infusion every 4 weeks would put the most infusions at 52-53 at 7/2010. If they had been in the trial they would've had many more infusions. So... I am confused

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Old 01-05-2011, 04:03 PM #3
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Quote:
Originally Posted by SallyC View Post
I know this is an up thread and it should be, but I know you will pray for Angela, who was put in John Hopkin for a new experimental drug treatment, for PML.

I'm praying it works and she gets better.

Her orig PML video....
http://www.youtube.com/watch?v=X4aOG2UJDFA
Sally, I watched the video; Angela is talking about plasmapherisis (sp ?). Is there another video where she talks about an experimental drug treatment ?
Thanks
Linda
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Old 01-05-2011, 04:56 PM #4
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I go for 1yr on Ty MRI tomorrow. I'll add them to my album here in a couple days. By the amount of sensory i've lost past 12 months, brain's gonna look like swiss cheeze. Curious to see how big the north star in my avatar got.
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Old 01-05-2011, 08:09 PM #5
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Sally, I watched the video; Angela is talking about plasmapherisis (sp ?). Is there another video where she talks about an experimental drug treatment ?
Thanks
Linda
That was the first PML tape, there is also an old tape from 2009 about her doing well at 9mos on TY...then in Oct, 2010 her tape, in the hosp, with PML.

She was just put in John Hopkins last Fri, for experimental treatment and there is no new tape, yet. I'm hoping for a tape showing she is better..please, God.
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Old 01-06-2011, 01:45 PM #6
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Default Angela responding to CMX001
Another Tysabri PML patient responding to CMX001

http://www.facebook.com/pages/Flower...d=154192398822

CMX001 still investigational – see link below

http://www.chimerix-inc.com/therapeu...ategory/cmx001
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Old 01-06-2011, 02:46 PM #7
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Another Tysabri PML patient responding to CMX001

http://www.facebook.com/pages/Flower...d=154192398822

CMX001 still investigational – see link below

http://www.chimerix-inc.com/therapeu...ategory/cmx001
Thanks so much for the update on Angela. I hope her improvement continues.

Also thanks for the link on the new anti viral, that seems to be helping her.

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Old 01-06-2011, 07:26 PM #8
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So I got MRI'd today, play the cd and they didn't put all the series on disc! Tomorrow I have to go back and have them burn another cd. However what they did put to compare with 2010 MRI shows smaller lesion then last yrs so at the moment, im shocked. I hope I see more on other series tomorrow because im getting off Ty (its a done deal) and if it worked i'll be screwed but worse yet - ive lost so much sensory function since last MRI how could brain and stem look better?
We'll see tomorrow.
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Old 01-07-2011, 10:53 AM #9
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Originally Posted by EddieF View Post
So I got MRI'd today, play the cd and they didn't put all the series on disc! Tomorrow I have to go back and have them burn another cd. However what they did put to compare with 2010 MRI shows smaller lesion then last yrs so at the moment, im shocked. I hope I see more on other series tomorrow because im getting off Ty (its a done deal) and if it worked i'll be screwed but worse yet - ive lost so much sensory function since last MRI how could brain and stem look better?
We'll see tomorrow.
It is known that the number of lesions and their appearance does not often correlate with the symptoms of an MS patient. The trial data for these drugs hang their hat most of the time on these lesion numbers. But the location of the lesions is more important and just a few can cause a lot of problems. Lesions can come and go so how a patient feels and their actual symptoms is a far better indicator of how a particular medication is working.

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