FTY 720 trial PPMS (2009)

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FTY 720 trial PPMS (2009)

Postby Astrid » Sat Oct 03, 2009 9:16 am

Hi,

My name is Astrid and I am from The Netherlands.
My husband (Rob) is diagnosed with PPMS in August 2006.
Since January 2009 het is on the new FTY 720 trial for PPMS.
We are 41 en 45 years old, no kids, own business wich I run on my own now.
Rob is getting worse everyday and we think he has side-effects from the FTY (thinking because in this trail you are not sure if you are on the drugs or not).
His EDSS score is 5.0, he doesn't feel his feet or legs, arm and hands but stil can walk about 200-300 meters.
He cann't coordinate his right hand anymore and his left hand is getting worse. He always has tintling (is that the right word?) sensations all over his body and his legs and arms feel very heavy and painfull.
Het had to quit working 2 years ago and is very tired.
But... we still try to enjoy life and when it is possible we go to parties, out for dinner or to friends.

I'd like to know if there is anyone out ther who is on this new trial for PPMS.
How are you feeling?

Thanks and I hope to hear from you!
We try to continue oure life
My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands
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Postby scorpion » Sat Oct 03, 2009 9:59 am

Don't give up hope Astrid. I am sure it is hard to watch your husband struggle with his MS but I truly believe in our lifetime we will see some type of medication/treatment that will IMPROVE your husband's disability. Good luck to both of you and know that you are certainly not alone!!!!
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Postby Astrid » Mon Oct 05, 2009 6:06 am

Thanks you, Scorpion.
My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands
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Postby jay123 » Thu Oct 08, 2009 6:30 am

First thing I would do is quit the trial and try anything else! Tysabri has helped some PP people, LDN, Novantrone...
The drug either isn't working or he is on the placebo.
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Postby Astrid » Fri Oct 09, 2009 9:02 am

Tyssbri didn't help PPMS the VUMC told us, alswell as LND and Novantrone.y
My husband, Rob, has PPMS, diagnosed august 2006, EDSS score 5.0. He is on the new FTY 720 trial, phase III since January 2009. We are from The Netherlands
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Astrid
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Posts: 8
Joined: Fri Oct 02, 2009 3:00 pm
Location: The Netherlands


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