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Old 09-03-2012, 01:42 PM #11
4-eyes 4-eyes is offline
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I also did HiCy for myasthenia gravis in Nov of 2010. It's been a good thing.
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Old 09-03-2012, 02:42 PM #12
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Redpenguin is in a new study now...see quote...
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So - now I'm doing this study on Ocrelizumab. It's a double blind study with Rebif. I either get the Ocre or the rebif. Of course, being that rebif has terrible side effects - i will probably very quickly know which group i'm in (both groups have an IV drip - which would be the Ocre or the placebo and both groups shoot up with rebif or placebo 3x a week).
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Old 09-06-2012, 10:26 AM #13
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Thanks for the explanation, which shows great knowledge. Yes, I would be a goner with all the after-drugs. Yikes. Total spaz attack would ensue. Thanks again, Marlene.
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Old 09-09-2012, 07:12 PM #14
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Redpenguin - Any updates on the trial? I was reading and wondering if we maybe in the same trial. I go to UCSF for the infusions and its called the Opera Trial. I cant tell what drug I am on, I only got DX'd this year. I have no side effects from the Rebif shots, the only thing from the infusions is I get crazy tired during them, but alot of that could be from the 4 hour drive to get to UCSF. Other than that I have no idea if I am experiencing side effects from the drug, MS or just life.
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Old 01-13-2013, 03:11 PM #15
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I'm starting this same study I just had my first day of paperwork and EKG. I start the med feb 7 and hope I get Ocre instead of rebif
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Old 01-13-2013, 04:46 PM #16
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Welcome, TM and good luck with the trial.
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Old 01-14-2013, 12:17 AM #17
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Great seeing another familiar face again! I used to be here more back in 2008-2009, when you were posting, so I remember you well!!!

During the years you were posting, I had just started Tysabri---but I had to go off of it last year because I tested positive for JC and didn't want to take that risk...

Glad you're back--and good luck with the study you're doing!
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Old 04-11-2013, 01:24 PM #18
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I too am in this study! Unfortunately, I'm positive I got the Rebif and not the study drug. My sister is in a different study with a similar drug (alumtuzimab), and she did get the study drug and is doing really well! Be happy your Rebif is placebo - because I am up to the 44 dose now and last night was NOT fun. I'm beginning to wonder if I can do the Rebif - walking around everyday feeling like you have the flu and a migraine is NOT quality of life...

On the plus side, even though I am on the Rebif, at the end of the study I have the option to go on the study drug. So only two more years of injections to go...
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