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Thread: Ocrevous scheduled Yay!!!

  1. #21
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    Quote Originally Posted by Lazarus View Post
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    This is really interesting to me. I have been on rituxan for about 4 years. Rituxan and Ocrevus are the same and I have been wondering about asking several dosing questions. Can you tell me who your Boston doc is? I am in western MA. Friends of mine go to UMass Worcester.

    Thanks for any info. You have

    Did you ask what your doc meant by “works better”. I have been wondering if people ever get more than the amount received in the standard dosage protocol. Higher dosing or more frequent dosing...?? That is my focus right now.
    I see Jacob Sloane, MD, PhD at Beth Israel Deaconess Medical Center in Boston. He said that Rituxan gets into the brain and spinal cord better at the higher dose. I just started the 1000 mg dose two times a year last October. Before that I was taking 500 mg two weeks apart every six months.
    Last edited by Ikoiko; 01-17-2018 at 08:55 AM. Reason: spelling

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  3. #22
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    Quote Originally Posted by Ikoiko View Post
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    I see Jacob Sloane, MD, PhD at Beth Israel Deaconess Medical Center in Boston. He said that Rituxan gets into the brain and spinal cord better at the higher dose. I just started the 1000 mg dose two times a year last October. Before that I was taking 500 mg two weeks apart every six months.

    Thank you...thank you..thank you. I appreciate the answer.
    I will take it up with my neuro next week. Your process confirms my instincts.
    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. #23
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    I had the full dose today. Went fine. Tired but okay. Hoping for positive results. Apparently I am the first at Baystate to get the full dose. Last summer when I was there there we a few other people getting it.
    I would imagine they will be in for full dose.
    Fingers crossed.
    Be the person your dog thinks you are

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  7. #24
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    ssuan, hoping for really great things from this for you.
    Virginia

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    Distinguished Community Member agate's Avatar
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    This is so encouraging, ssusan!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  11. #26
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    Crossing fingers for you!

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  13. #27
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    Quote Originally Posted by ssusan View Post
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    I had the full dose today. Went fine. Tired but okay. Hoping for positive results. Apparently I am the first at Baystate to get the full dose. Last summer when I was there there we a few other people getting it.
    I would imagine they will be in for full dose.
    Fingers crossed.
    Great! Wishing you lots of good strength.
    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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  15. #28
    Distinguished Community Member Pegakafarmgirl's Avatar
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    ssusan glad this went well for you,, onward and upward,, we go !!

    Well its finally scheduled {sp} Wednesday at Des Moines,, he really ticked me off by saying our Unity Point hospital, was inadequit to do this,, he didn't trust them,, I may get it done there, but I am changing neuro's,,
    " Don't outsmart your common sense"

    Peg

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  17. #29
    Distinguished Community Member agate's Avatar
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    Sounds as if you'll go to Des Moines for the infusion on Wednesday but change neuros--? Maybe you can get a neuro who knows and cares more about getting you to an infusion center (in a timely way) that isn't such a major trip.

    Travel is tiring.

    Having to get up and ready by a certain time to meet an appointment time is tiring.

    If I had to have in infusion lasting hours, I'd want to be as well rested as possible just because something like that can take longer than expected.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  19. #30
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Sounds as if you'll go to Des Moines for the infusion on Wednesday but change neuros--? Maybe you can get a neuro who knows and cares more about getting you to an infusion center (in a timely way) that isn't such a major trip.

    Travel is tiring.

    Having to get up and ready by a certain time to meet an appointment time is tiring.

    If I had to have in infusion lasting hours, I'd want to be as well rested as possible just because something like that can take longer than expected.

    I was thinking...maybe her neuro wants one facility rather than the other because of the quality difference between the 2. One of them might even be more equipped to handle a crisis with the infusion. It could be....
    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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