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-   -   remember me? And - Ocrelizumab study? (https://www.neurotalk.org/multiple-sclerosis/165756-remember-ocrelizumab-study.html)

4-eyes 09-03-2012 01:42 PM

I also did HiCy for myasthenia gravis in Nov of 2010. It's been a good thing.

SallyC 09-03-2012 02:42 PM

Redpenguin is in a new study now...see quote...
Quote:

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).

Mariel 09-06-2012 10:26 AM

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.

jadd 09-09-2012 07:12 PM

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.

Tmparker04 01-13-2013 03:11 PM

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

SallyC 01-13-2013 04:46 PM

Welcome, TM and good luck with the trial.:)

Keely 01-14-2013 12:17 AM

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! :hug:

AlwaysLateMommy 04-11-2013 01:24 PM

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...:D


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