FTY 720 Primary Progressive Study

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FTY 720 Primary Progressive Study

Postby Smilingface » Thu Jan 14, 2010 6:52 pm

Good news for FTY 720. After halting the study for primary progressive patients last fall, Novartis has re-opened enrollment. I was scheduled for the screening to enter the trial today. Yea!
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby carolew » Thu Jan 14, 2010 7:01 pm

yeh!!!!!!!!! good luck, Carole
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Postby KateCW » Sun Jan 24, 2010 2:14 pm

This is the first time I've heard of this, please keep us posted.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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Postby KateCW » Sun Jan 24, 2010 2:16 pm

I just noticed in your sig that you tried 4AP.I am anxious to try it while I still have a little mobility left. Can you tell me if it helped you? Are you still on it?
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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FTY 720 PPMS/4AP

Postby Smilingface » Sun Jan 24, 2010 4:09 pm

Hi KateCW,

I tried 4AP for 30 days and did not notice a change in my slow, awkward gait, so I stopped. I'm not sure why it did not work on me but I
would not hesitate to try it.
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Postby KateCW » Sun Jan 24, 2010 5:16 pm

I guess it's the so-called "luck of the draw". A percentage of people are helped, it's easy to get excited, but we never know if we'll be in that group of people. Ampyra, as it is now called, won't be available here in Canada for a few months and my neuro won't prescribe it from a compounding pharmacy, so I'll have to wait a bit.
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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FTY720/PPMS

Postby Smilingface » Sun May 30, 2010 6:16 pm

It's been 21/2 months now since I swallowed the pink pill. I'm driving myself crazy trying to figure out if I'm actually on the drug or not. My neuro said to expect changes 3-6 months after the first dose so it's a little too early to tell. I have had one abnormal blood test --- cholesterol and mild headache and unexplained nausea once in awhile but that's about it. Being in this trial with all the testing for adverse effects has not been easy!
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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FTY720/fingolimod/Gilenia

Postby Smilingface » Thu Jun 10, 2010 5:42 pm

Green light today for FTY 720 approval.

http://online.wsj.com/article/BT-CO-201 ... inesEurope
Primary Progressive, Onset 10 years ago at age 42, diagnosis 6 years ago, Vit D, Chinese Herbs, Exercise, yoga. So far tried antibiotics, fumaric acid and 4AP. Currently participant in the FTY720/PPMS Trial.<br />
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Smilingface
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Location: North Carolina


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