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1st half dose 12 hrs ago

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  • Mamabug
    replied
    Originally posted by Janene123 View Post
    This past weekend, he was at a college party, some dummy decided to start shooting and he was caught in the crossfire.
    How scary! I hope he isn't seriously injured.
    I also hope that you recover quickly from your cold symptoms so you'll be able to go visit him.

    Leave a comment:


  • REG53
    replied
    Janene, I am sorry about you son. I hope he will be okay.

    I am on Ocrevus and I have never had side effects like you are describing. I hope you will feel better soon and get to go visit your son.

    Leave a comment:


  • Janene123
    replied
    2nd half dose this past Monday

    I woke up Tuesday with a slight cold. Runny (but stuffed up) nose, head felt funny and slight fever. It has progressed to sleeping most of the day and night. I cannot see my 23 year old in the hospital since I am sick. This past weekend, he was at a college party, some dummy decided to start shooting and he was caught in the crossfire. I don't want to make him sick so I am staying away. Not sure if it is the Ocrevus but I did send an email to my neurologist. Lets see if he responds.

    Leave a comment:


  • scraphappy
    replied
    Started Ocrevus.

    Originally posted by DonnaH View Post
    I need to know from others how they were the morning after. I’m super flush my bp is above norm.
    during infusion I was super itchy yesterday and maxed on benedryl during infusion. Took and hr and half nap but felt decent overall.
    Girlfriend says she thinks I’m moving better, I don’t ‘feel’ any different.
    I don’t really expect any change until at least first full dose (if at all).
    someone let me know if y’all had same and for how long.
    thx
    I made it through both halves of the 1st dose without incident. In fact, I slept through both of them.

    I hope we both have positive results.

    Leave a comment:


  • DonnaH
    replied
    Update, 2nd 1/2 dose

    I took Claritin 3days before, 75mg benadryl day of, then post 3 days Claritin (per Nuro).
    Very minor itching this time and he said it was an Ocrevus reaction last time.
    Now all is back to normal, don't feel any better that's for sure.....Maybe next time.
    I'll go through the whole testing phase again to see what if I improve in 3mths.
    Nuro said give it 18/24 mths before we throw the towel in.

    Leave a comment:


  • oceanpride
    replied
    Thanks Marco. I was a little worried there for a bit.

    Leave a comment:


  • Marco
    replied
    Originally posted by oceanpride View Post
    WOW ! I thought they came back by them selves ?
    B-cells do repopulate on their own. That's why dosing is normally set for every 6 months. Each person will repopulate on a slightly different schedule.

    I'm on Rituximab, the precursor to Ocrelizumab, and it's fairly common for doctors to order blood tests to check for b-cell levels. Some people repopulate early and they then get rituximab on an abbreviated schedule. I'm not sure Ocrelizumab can be prescribed on an alternate schedule, but rituximab sure is.

    Leave a comment:


  • oceanpride
    replied
    WOW ! I thought they came back by them selves ? I guess I didn’t ask too many questions... just put faith in the whole process. Thanks for letting us know about your journey.

    Leave a comment:


  • DonnaH
    replied
    Ocruvus

    Turns out I really didn’t know the purpose of Ocrevus. My follow up with Nuro was a wow.
    turns out its sole purpose is to kill my B Cells. First half dose kills 80% then in 2 weeks it’ll kill the rest.
    I had to google spy to find out what the B cell is for. Well does a lot including making Plasma.
    He told my healthy GF she NEEDS them but they are paralyzing me .....uhhhh
    My reactions were to the O not the steroid, and next dose should be a piece of cake/no reactions.
    He told me I won’t get better just hopefully slow the PPMS slope I’m on.
    Then he follows with “hopefully” in 5 years if O works, they will have come up with a way to put back B cells...

    Leave a comment:


  • Mamabug
    replied
    I'm glad, Donna, that Marco was able to give you an answer. I wasn't clear what med you were talking about for your 1/2 dose.

    Leave a comment:


  • DonnaH
    replied
    Thanks,
    i got quicker response here then the DR/ infusion center.
    you said same as them BUT QUICKER. I appreciate this and this site my re and more.
    THANK YOU

    QUOTE=DonnaH;1519786]I need to know from others how they were the morning after. I’m super flush my bp is above norm.
    during infusion I was super itchy yesterday and maxed on benedryl during infusion. Took and hr and half nap but felt decent overall.
    Girlfriend says she thinks I’m moving better, I don’t ‘feel’ any different.
    I don’t really expect any change until at least first full dose (if at all).
    someone let me know if y’all had same and for how long.
    thx[/QUOTE]

    Leave a comment:


  • Marco
    replied
    You are probably experiencing the side effects and benefits of the steroids.

    Sorry so short... at the doctor's.

    I wish you well..

    Leave a comment:


  • DonnaH
    started a topic 1st half dose 12 hrs ago

    1st half dose 12 hrs ago

    I need to know from others how they were the morning after. I’m super flush my bp is above norm.
    during infusion I was super itchy yesterday and maxed on benedryl during infusion. Took and hr and half nap but felt decent overall.
    Girlfriend says she thinks I’m moving better, I don’t ‘feel’ any different.
    I don’t really expect any change until at least first full dose (if at all).
    someone let me know if y’all had same and for how long.
    thx
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