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Thread: Ocrevus (ocrelizumab) has FDA approval

  1. #21
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    Ssusan, this is exciting. Please keep us informed as to when you are able to get it, and everything that happens. Are you still R/R?

    Good Luck!
    Virginia

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  3. #22
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    ssusan, Dar and anyone who is about to start Ocrevus, I hope that it will go well for you and help you.

    I'm of two minds about the MS drugs in general and like to think that we're open to all views of the new ones that come along--even negative views.

    So, here goes.

    Some of the MS researchers have sounded a skeptical note--Dr. Annette Langer-Gould of Kaiser Permanente and Los Angeles Medical Center, for instance, in Health News Review (April 3). I know nothing about this news source, and not much about Dr. Annette Langer-Gould though I've seen her name often as one of the authors of research papers on MS:

    https://www.healthnewsreview.org/201...-drug-ocrevus/

    Dr. Langer-Gould is listed as one of a couple of researchers providing "additional clinical expert input" in the creation of this very comprehensive report on disease-modifying drugs in MS (March 2017):

    https://icer-review.org/wp-content/u...ort_030617.pdf
    Last edited by agate; 04-07-2017 at 09:08 PM.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

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

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  5. #23
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    Agate, this is very interesting. I think only time will tell, since so many people are already set to receive this drug. I hope Linda can stay on Rituxan since it has been so beneficial for her. However, it was my understanding that you can only stay on this drug for just so many years or doses. Is this true or am I mixed up with another drug?
    Virginia

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  7. #24
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    Quote Originally Posted by Virginia View Post
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    Agate, this is very interesting. I think only time will tell, since so many people are already set to receive this drug. I hope Linda can stay on Rituxan since it has been so beneficial for her. However, it was my understanding that you can only stay on this drug for just so many years or doses. Is this true or am I mixed up with another drug?
    I think you have it mixed up with another drug. Perhaps Novantrone? That had very strict limits and that was then. Now, they won't even give that much because the risks are known to be worse than originally thought.
    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. #25
    Distinguished Community Member agate's Avatar
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    Yes, I'm pretty sure you're thinking of Novantrone (mitoxantrone). It was known to have cardiac risks, and more recently some other problems have surfaced--a colorectal cancer risk, for one thing:

    http://www.medicalnewstoday.com/articles/310121.php
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

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

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  11. #26
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    I have been secondary progressive for several years. Thanks for good wishes. Meanwhile I am starting 3 daze of Solumedrol tomorrow. Hoping it helps constant motion sickness,vision, monster fatigue blah blah blah
    I will keep you guys posted about the new drug.
    Be the person your dog thinks you are

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  13. #27
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    Thank you, Susan. I hope you improve quickly.

    It's interesting to me that we can only get IVSM Monday through Friday. Is our misery or suffering not worth treating immediately?

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

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  15. #28
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    Quote Originally Posted by agate View Post
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    Yes, I'm pretty sure you're thinking of Novantrone (mitoxantrone). It was known to have cardiac risks, and more recently some other problems have surfaced--a colorectal cancer risk, for one thing:

    http://www.medicalnewstoday.com/articles/310121.php
    I knew it was novantrone. I took the full amount allowed. I loved it. Felt great while on it. And then...
    Although it has been years since I stopped taking it, my doc still orders a nuclear heart test periodically because the heart damage can occur years later.
    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. #29
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    Quote Originally Posted by stillstANNding View Post
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    Thank you, Susan. I hope you improve quickly.

    It's interesting to me that we can only get IVSM Monday through Friday. Is our misery or suffering not worth treating immediately?

    ANN
    It depends on where you get the solumedrol. When I got it at the cancer center infusion building it was Monday through Friday. But when I got it at home I could get it anytime. I did it monthly for 4 years.
    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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  19. #30
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    Thanks everyone for reminding which drug I was thinking of - Novantrone.

    I am excited for Susan and Dar and just hoping they see great improvement and also that both of them keeps updating us. This is the only way we will ever find out anything about this drug. So hoping for good things from it.
    Virginia

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