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Thread: Ocrevus redux

  1. #11
    Distinguished Community Member Pegakafarmgirl's Avatar
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    I had TV,, and brought a book,, the nurses, came in to visit,, and yes I was in a recliner,, and they wanted me to be as still as possible,, it was doable
    " Don't outsmart your common sense"

    Peg

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  3. #12
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Pegakafarmgirl View Post
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    good luck ssusan,, my firs t infusion was July 5th >>half a dose. I go in the 19th for the other half,,

    as far as I can tell,, nothing has changed, maybe after this infusion, I can tell if there is a change,,we'll see

    5 hours I was in,, nurses checked blood pressure every 15 minutes,,
    Hi Peg,
    I wanted to say that this is not a medicine that will give you an immediate fix. I mean, if you have a headache and take an aspirin the headache goes away. You are aware the headache is gone. With this you may have to be patient. Benefits may be subtle and you will miss them if you are looking for big results. Just a guess but I thought it worth mentioning.

    I have been taking it (rituxan) for several years and there are some things happening now that are improvements I never expected. Yet I am having some newish problems....serious ones that need attention...

    So you see, we do not have a miracle yet. But rituxan has been pretty good for giving me back real life.
    Best of luck.
    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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  5. #13
    Distinguished Community Member BBS1951's Avatar
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    Laz, will your ur insurance force you off Rituxan and onto Ocrevus?

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  7. #14
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by BBS1951 View Post
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    Laz, will your ur insurance force you off Rituxan and onto Ocrevus?
    I do not think so. I have been using off label chemo for at least 17 years. My previous cancer is used to my advantage to argue for them.
    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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  9. #15
    Distinguished Community Member agate's Avatar
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    Being as still as possible for 5 hours? A person might need the bathroom a couple of times in the 5 hours. Maybe they let you take a short break now and then...?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #16
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    I would imagine like Solumedrol infusion, you can go to bathroom bringing IV with you.
    with you. I always drink a lot of water during that and have to pee frequently.
    I am going to bring my iPad and binge watch season 3 of Mozart in the city.

    Linda, thank you so much for keeping my expectations in check.

    Peg, thank you for sharing your experience.

    I am so tired I'll probably sleep
    Last edited by ssusan; 07-14-2017 at 12:44 PM.

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  13. #17
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by ssusan View Post
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    I would imagine like Solumedrol infusion, you can go to bathroom bringing IV with you.
    with you. I always drink a lot of water during that and have to pee frequently.
    I am going to bring my iPad and binge watch season 3 of Mozart in the city.

    Linda, thank you so much for keeping my expectations in check.

    Peg, thank you for sharing your experience.

    I am so tired I'll probably sleep
    If you take your IV with you to the bathroom, you're not being as quiet as possible but maybe they don't mean perfectly still as in an MRI machine.

    Sleeping sounds good. I drop off to sleep during an MRI. There's no way I could stay awake. But I also drop off to sleep the instant my head hits the pillow. Just about any pillow.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  15. #18
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Being as still as possible for 5 hours? A person might need the bathroom a couple of times in the 5 hours. Maybe they let you take a short break now and then...?
    Infusion centers are quite comfortable and people are often very active. You are surrounded by a lot of others. Everyone has a television. You sit in a recliner. Sleeep. Read. Write. Color. Use your iPad or computer. Have lunch. Snacks. Get up and walk to bathroom whenever you need. Chat with people. I write a lot of poetry in the quite hours the infusion affords me. It is a pleasant day. Not a problem day.
    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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  17. #19
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    Peg and Linda can answer better.but I would imagine that as still as possible means no unnecessary movement. It's not like an MRI: I've been doing Solumedrol infusions since -
    1999. Diagnosed July 22. Do I have a party? Oh yeah, a several hour infusion, lol. Maybe they could put a margarita in it. The

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  19. #20
    Distinguished Community Member BBS1951's Avatar
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    Maybe like my infusion center? People are only moving around to use the restroom.( No one watching TV luckily-- I hate TV noise--what's with loud Tvs in doc waiting rooms? GEESH...) people are usually Reading, doing internet, taking to a family member. Not much socializing amongst patients.

    Typically I read, stare off, daydream. When it gets noisier, I put on iPod and listen to favorite songs. :)

    There were two gals last time saying they'll be starting Ocrevus.
    Last edited by BBS1951; 07-14-2017 at 03:18 PM.

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