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Thread: new group on Facebook for Ocrevus users

  1. #1
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    Default new group on Facebook for Ocrevus users

    It is called Ocrevus for PPMS and SPMS. It began last month. It is a closed group so you need to join the group.
    Be the person your dog thinks you are

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  3. #2
    Distinguished Community Member SuzE-Q's Avatar
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    Thanks!

    How are you doing on it, Susan?

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  5. #3
    Distinguished Community Member agate's Avatar
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    Apparently some people with SPMS are using Ocrevus. Interesting that this possibility hasn't been mentioned in the articles that appear in medical periodicals.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  7. #4
    Distinguished Community Member Sunshine's Avatar
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    Why do people use Facebook for medical problems? It’s so not anonymous.

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  9. #5
    Distinguished Community Member agate's Avatar
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    Good question, Sunshine, and yet there are umpteen Facebook pages on medical conditions.

    The person in charge of a local MS support group here recently set up a Facebook page for that group. It was partly meant to be more supportive for those of us who never get to the meetings. It seemed like not such a bad idea, and so I joined. There hasn't been any activity there so far (over a month now), and it is a "private group," which means that even to find it, I have to look for "Groups" under the "More" section on my Facebook page, and it won't be there until I click on "Manage Groups" on the "Groups" page. That's not so very private since everyone's real-life name is used but it's an attempt at being less open.

    I haven't joined the Ocrevus group but it's listed as a private group as well.

    My impression of Facebook is that it's harder to carry on any sustained discussion there than on a message board. Too many distractions, too many people tossing in comments, and the emphasis isn't on the substance of the posts. You can doll up your post by giving it a color background and adding little images but you can't really say much.
    Last edited by agate; 05-03-2018 at 07:10 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #6
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    Quote Originally Posted by SuzE-Q View Post
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    Thanks!

    How are you doing on it, Susan?
    My MS has been kickin my butt. I had ver positive response to first dose last summer. Don't feel like I got anything from it in January. Hopeful for July .
    I see neuro in a few weeks.
    Be the person your dog thinks you are

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  13. #7
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    I'm sorry to hear that the second dose did not seem to help, Susan.

    We will hope with you.

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

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  15. #8
    Distinguished Community Member Sunshine's Avatar
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    Dang ssusan. What a terrible disease.

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  17. #9
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    Sure hoping for better results with next infusion ssusan. Was hoping it would be good this time.
    Virginia

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  19. #10
    Distinguished Community Member agate's Avatar
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    This is sad. It's not easy to get to an infusion center and spend most of the day hooked up there, all for something that turns out to make a person feel worse.

    I hope you've let the doctor know about this. Maybe there's a dosage adjustment that could be made?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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