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Old 01-25-2016, 12:02 PM
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JoanB JoanB is offline
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Join Date: Sep 2009
Location: Pittsburgh
Posts: 739
15 yr Member
JoanB JoanB is offline
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JoanB's Avatar
 
Join Date: Sep 2009
Location: Pittsburgh
Posts: 739
15 yr Member
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Hey all, maybe I missed this in your posts, but Medday's Phase 3 results were announced last year. This is a French company, and this medication is not FDA approved yet. While the results were far less impressive (about 12% of subjects saw disability improvement) vs 90-something% in the Phase 2 it's still a lot better than the 0% that people with PPMS have now for anything. And be aware that what they were measuring was improvement. There could be a neuroprotective component that hasn't been measured yet. I would post a link, but for some strange reason, I'm coming up with a dearth of useful Google hits for this topic at the moment. Mostly just getting the old news about the Stage 2 stuff.

And yes Sally, this is specifically for PPMS, not RRMS.

I have been taking 200mg (not mcg) as was used in the trial for about three months now. An MS specialist prescribed it for me, and I get it filled from a compounding pharmacy. Since it's not FDA-approved yet, my insurance won't pay for any of it. It's running me about $90 for 100 pills, which is about a month and half supply.

Wish I could report amazing results, but so far, I'm not noticing much of anything, including any side effects. Of course, it's only been only half the time of the trial, so who knows?

I'll be happy to report back again if I have any news. And feel free to ask questions if you have any.
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"Thanks for this!" says:
Kitty (01-25-2016), mrsD (01-25-2016), SallyC (01-29-2016)