This Is MS Multiple Sclerosis Community: Knowledge & Support

Anyone heard anything on BAF 312? It's a cousin to FTY 720, I just finished Phase II and am trying to decide if I should continue or not with Phase III.

Marybeth

Marybeth, it looks like Novartis is still recruiting for the phase 2 trial:

http://www.clinicaltrials.gov/ct2/show/ ... ocs=Y#locn

Did you do well on BAF312 in the phase 2 trial?

dignan,
I GOT MY LIFE BACK for a few months, I was 95% symptom free until my liver enzymes started to climb and I had to take a break from the drug for a month and had a flare (really bad one too). I have been back on the drug for about 3 weeks now and I'm feeling better (after taking a break from the drug my liver returned to normal) but I'm getting the run a round from the "guy in charge" of it all (I've never met him, so he has no idea what the last 6 months of my life have been like). Monday I go off the drug for at least a month and this "guy in charge" says that I would have had a flare even if I didn't go off the drug, even though returning back on the drug I started to improve - all a big coincidence I guess. I'll get my blood checked again on Monday, so I'm kind of waiting to see how that goes. I've been hoping that I'm on the 10mg, BUT the "guy in charge" says that even the .5 mg would have made my liver toxic, I guess thats just how my liver is. He really knows a lot about a phase II drug that I am the first to receive.

Ever time I re-dose, I have to sit in the clinic for 6-plus hours while my heart rate drops, I have to find someone to drive me home, pick up my daughter and feed her for me (I have gotten a migraine each time I re-dose). I've done this 3 times now. I'm not sure I (or my family) can handle going on/off this drug so many times if I get as sick as I was this last time, although, I'm kind of out of options. I'm told I was the first in the US to get this drug, I'm kind of wishing I wasn't. I was hoping they would take better care of me, considering I let them put an unknown drug in me. But who knows I could be on placebo according to the "guy in charge" (he's right, I might be on placebo, I just really think I'm on the drug with all I have been through and I kind of really dislike him at this point).

So, I guess this is me venting, but I really am not sure if I want to stay with this. YES I want the drug, but I want to be a bit more stable then not knowing when I might go off the drug, I've never had flares as bad as this last one and I can't do steroids while in this study. I just want to stay in remission until a cure (or ccsvi).

What would you do?

If you have to go off the drug for one month, but then get the real thing for sure after that, I think it might be worth doing if, as you say, you have no other options. If that was my situation, I guess I would stick with the drug. Is it an extension study you'd be participating in?

I was told that BAF 312 was supposed to be even better that Fingolimod or FTY720 ...but they are only in trial studies at the moment.

Susan

Do we know any more about this drug? In particular, I am wondering how its action is different to FTY720 (when it works at its optimum)?

ie does this drug do any more than trapping the exact same lymphocytes that FTY720 does?