This Is MS Multiple Sclerosis Community: Knowledge & Support

A little more detail obtained from my research nurse Friday: Three-Five year study, placebo vs. 1.25 mg. The initial screening was described to me and sounds just like what Carolew posted previously for her extension phase. One week of visits to include eyes, pulmonary function, heart function, dermatology, baseline MRI, baseline blood work. I will have to get all tests done with doctors near the MS clinic who have agreed to see patients in this trial. Wonder who pays for all this stuff? There is another visit two weeks after I pass the screening, then monthly for a year. After one year, the MRI is repeated. I asked if there are plans for re-randomization after a certain length of time. The answer was: After the core study is complete, the drug may become open-label.

Carolew, I would like to correspond furthur with you and any others with special interest in this trial---Can we try email?

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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 />

Novartis pays for all of this and the taxis to get you to the tests as well....$$$$$ As you mentionned, Smilingface... the extension study for me will last until the drug comes out on the market or it is discontinued for any X reason.
In september '09, they will tell me if I am on .5 or 1.25 mg of the drug.
I hope the neurologists who will prescribe it later will not hesitate to combine it with the other established treatments.
take care all, Carole