This Is MS Multiple Sclerosis Community: Knowledge & Support

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!

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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 />

yeh!!!!!!!!! good luck, Carole

This is the first time I've heard of this, please keep us posted.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

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?

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

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.

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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 />

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.

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Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy

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!

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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 />

Green light today for FTY 720 approval.

http://online.wsj.com/article/BT-CO-201 ... inesEurope

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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 />