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Thread: Ocrevus (ocrelizumab) has FDA approval

  1. #11
    Distinguished Community Member agate's Avatar
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    Dar, it's nice to see you here again!

    I hope you'll be able to make the right decision, the one that will work for you. Maybe you can let us know what you decide and how things are going?

    For those who weren't here then or don't recall, Dar was very active on this board for a long time. She was here when I registered (2001) as bntgal, I think, or maybe it was Bait&Tackle?
    If you don't know where you are going, any road will get you there.
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    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  3. #12
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    Quote Originally Posted by Jen's Solitude View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Howie and others, I am scheduled to begin using this drug around May/June, that is if I'm not scared off by what I read.

    My neuro seems to think it can be helpful. He told me during my last visit that he has patients lined up to try the drug and how very disappointed they were by the delay caused by the FDA. They are much worse than me so I can certainly understand their disappointment.

    I just came off a terrible go-round with Ampyra so am feeling a little hesitant about starting something else. Of course the Ampyra was just to help me walk better it wasn't meant to slow down disease progression. The side effects were so bad that I couldn't even last a full month. Based on all that was going on my neuro told me to stop taking the Ampyra, which I had already decided to do the day before I called him.

    I will keep researching on my own and of course talk to my neuro at my next appointment then decide whether I will try Ocrevus or not.
    Hey DAR. Good to see you. That's gotta be a hard decision for sure. Am sorry the Ampyra was bad for you. Dang...

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  5. #13
    Distinguished Community Member Lazarus's Avatar
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    Hi dar,
    Go back up and look at my post (#4 above in this thread)
    so, I have been on rituxan for several years now. If you read what I posted you will see that ocrelizumab and rituximab are the same drug. People have few bad reactions. It has certainly worked for me. And it has a good safety record.

    Good luck and ask any questions you have...really, it is quite helpful. I am lucky in that sense. I hope you are too.
    Last edited by Lazarus; 04-05-2017 at 01:51 PM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  7. #14
    Distinguished Community Member agate's Avatar
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    If you haven't already looked at the National MS Society Website, they have a page about Ocrevus. I was particularly interested in whether it will be prescribed for SPMS. My guess is that it will be, in some cases. This is what it says:

    Q. Will Ocrevus help people with secondary progressive MS who are no longer experiencing relapses?

    A. We don’t know. So far, the clinical trials of Ocrevus have involved people with relapsing forms of MS and primary progressive MS. Results were announced as positive for the trials in these populations. There is no data yet on whether Ocrevus may be effective in those people with secondary progressive MS who are no longer experiencing relapses.
    This article was posted on March 29:

    http://www.nationalmssociety.org/Abo...proves-Ocrevus

    Here's what it says about ocrelizumab versus rituximab:

    Q. Is Ocrevus the same as rituximab, which is a therapy used to treat some cancers?
    A. No, and Ocrevus is not a derivative of rituximab. Both rituximab and Ocrevus work by depleting B cells. However, the two medications are not the same. Based on published reports, Ocrevus is manufactured differently than rituximab. Ocrevus is mostly human, and rituximab is equal parts mouse and human. These monoclonal antibodies bind to specific, but overlapping, areas of a molecule on immune B cells (called CD20 cells). There are also differences in the ways that rituximab and Ocrevus induce the death of CD20 B cells. Whether these differences are meaningful in terms of potential effectiveness in MS, or in terms of safety, is difficult to say at this time.
    Almost the same but not quite, apparently.
    Last edited by agate; 04-05-2017 at 02:00 PM.
    If you don't know where you are going, any road will get you there.
    --Lewis Carroll

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  9. #15
    Distinguished Community Member Howie's Avatar
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    Cool

    Agate, you have a good memory for someone with a bad brain. DAR was bntgal in another life. We have been here a long time, and seen many come and go.

    The strongest reason for the people to retain the right to keep and bear arms is, as a last resort, to protect themselves against tyranny in government.-Thomas Jefferson

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  11. #16
    Distinguished Community Member Frog42's Avatar
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    Finally, Howie uses a pic of himself!


    Whatever happens around you, don't take it personally. Nothing other people do is because of you. It is because of themselves. -- Miguel Ruiz

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  13. #17
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    I too like that Howie is showing up as himself now.

    Dar, sorry Ampyra did not work for you. I will be very interested to hear how you react to Acrevus. If it helps you the way Rituxan has helped Linda. Also side effects would be helpful to know. Please keep in touch with us.
    Virginia

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  15. #18
    Distinguished Community Member agate's Avatar
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    Yes, Howie, thank you for finally supplying a likeness of yourself.

    I should admit that when I was new here, the whole idea of a message board filled with people talking about MS was mind-boggling, and so I started a list of the people here, especially the more active people, just so I could remember who all of them were. I still have that list, and DAR/bntgal is on it.

    The list got so long so fast that I gave up on it pretty soon. That's how busy that board was then.

    Before there was an Internet and message boards, people with MS who couldn't get very far tended to stay home and not see many people. This board was a whole new world, with real people in it.

    So my memory isn't so great. I make a lot of lists.
    If you don't know where you are going, any road will get you there.
    --Lewis Carroll

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  17. #19
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    Hi Dar, I am also going to start this. I am very excited. It was supposed to pass the FDA last July. Then December. PFinally last week. It is still not available at least here and they are having meeting next week about insurance.

    My doc at MS Clinic doesn't have privileges at Northampton or Springfield who does and can prescribe it. Yikes.
    Meanwhile I have been on big slide and am going to do 3 daze of Solumedrol next week.

    Dar, I am not nervous about it. Good chance it could stop the slide.
    -Susan
    Last edited by ssusan; 04-07-2017 at 01:09 PM.
    Be the person your dog thinks you are

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  19. #20
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    Good luck to you, Susan. Please report back. Also good lucknw insurance.

    ANN
    There comes a time when silence is betrayal.- MLK

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