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Thread: Ocrevus Check-In

  1. #41
    Distinguished Community Member agate's Avatar
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    Linda, do you recall how long you were on Rituxan before you started to notice a difference in the way you felt?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #42
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by agate View Post
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    Linda, do you recall how long you were on Rituxan before you started to notice a difference in the way you felt?
    That is the question I keep asking myself.
    What I do know is that, as with IVIg, I get an immediate benefit.

    But, long term improvements are like accumulating long term disability. Change happens slowly and you don't really notice. It was several years before I started saying that I could stand still, I could walk a few steps without my walker and I was much more energetic throughout the day.

    In the last two years on rituxan those improvements have remained. I am now active 10 hours a day. I can stand and walk for several minutes at a time. What I mean is that I can walk unaided for several minutes at a time. In the clear, no walls to use for support, just walking like I used to.

    So, I would say that real improvements started showing up after a couple of years and those improvements have only gotten stronger since then.
    Last edited by Lazarus; 11-08-2017 at 02:17 PM.
    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. #43
    Distinguished Community Member Jen's Solitude's Avatar
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    Hey Everyone,

    My check-up was good. He explained that my goal is to be exactly where I am right now once a year has passed. He said my right leg is about the same since the last time he examined it, which he said was good. So now we are hoping next year it will still be no worse for wear.

    He told me that the mature B-cells are destroyed by the Ocrevus which stops the progression of MS in my brain. He said they don't really know why it occurs just that it does occur. I will be getting another brain MRI right before I see him in April to see if there is any improvement/difference and then I will be receiving a full dose from there on out. He said it should take as long since it turns out they will be administering it at a faster pace. We sure were glad to hear that.

    Unrelated to the Ocrevous he asked me again if I had any falls. Last time he asked the answer was no, shortly after that I did have a very strange fall in my bedroom. I had just knelt over and stood up and it was like someone just pushed me over. Before I knew it I had fallen backwards with no time to catch myself. He said it is common and involves the equilibrium and my inner ear and the whole balance and orienting myself. He wanted me to be careful and make sure I always have something to grab hold of for a few seconds so that my brain catches up with my positioning and doesn't just allow me to fall backwards. Strange disease this MS. You think you've been through it all and suddenly something new occurs.

    I told him a month later I experienced that same weird sensation while in the bathroom but that I recognized it and grabbed hold of my sink and pulled my body forward. It took only a couple of seconds before my brain and body got in sync again so I avoided another fall. He told me it would keep happening without warning so just be prepared for the unexpected.

    After we finished with the Increvous he then tackled the issues I had been having with my pcp. He agreed to provide scripts for my Lyrica, and Xanax from now on. He even gave me a script for my diabetes med. since my doctor was holding them all hostage to force me to come in for an appointment. He agreed with us that it was time to find another family doctor. I will see her in December.

    Well if anyone has any questions fire away and hopefully I can answer them for you.
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  7. #44
    Distinguished Community Member agate's Avatar
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    There's a lot of good information there. Thank you for sharing your experience!

    Yes, falls or near-falls just seem to go with the MS territory, don't they? I have found over the years that I have got better at judging when I might be in danger of falling, when to grab onto a support.

    Sounds as if the neuro is being straightforward with you and not promising any rose gardens. But if you can stop the MS from making any more inroads, that's impressive.

    More power to you and Ocrevus!
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  9. #45
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    DAR, sounds liked a good report to me. Glad to hear that you are where the Doctor expected you to be.

    You seem to have a good Neuro who will provide Rx's outside of their specialty.
    Virginia

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  11. #46
    Distinguished Community Member Lazarus's Avatar
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    Your doctor sounds fabulous. Great explanation of falls. If you look back at my post above, I edited it. I was trying to be clearer about the improvement I am experiencing.

    I know I have been on rituxan for years now but it is the very real hope for those of us on these twin drugs.
    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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  13. #47
    Distinguished Community Member BBS1951's Avatar
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    DAR and Laz, thank you both for your helpful posts.

    DAR, what you describe matches my fall a few days ago.

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  15. #48
    Distinguished Community Member Jen's Solitude's Avatar
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    While he hasn't promised a lot it sure would be great to receive any benefit as far as balance and walking is concerned.

    BBS, did your fall happen out of the blue. Mine's was so sudden I did not even tense up. One minute I was up the next I had fallen backwards. In fact I just instinctively tried to stand up only to discover my legs were too weak to support me, so I called Curt to help me get up. It was certainly one of my weirdest experiences to date. My Nero agreed that the falls are strange and sudden.

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  17. #49
    Distinguished Community Member BBS1951's Avatar
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    A charley horse woke me up. I stood on the floor leaning over the bed, trying to stretch it out, and it stretched out. Then, suddenly I became very dizzy, next thing I knew i had fallen and hit my head against a very low night stand, crashing the stuff of it, and then kept going down, hit head on ground,.that was the last I recalled. Next thing I knew my DH was look g over me while I was lying on bed.

    DH said I was out of it for a minute. Then, for several hours afterwards, I was nauseous and dizzy. In retrospect perhaps it was a mild concussion.

    Since then, I have kept the phone in an apron pocket I wear so I can call DH at work if I fall and am conscious. Also, am more careful careening Around the house.
    Last edited by BBS1951; 11-12-2017 at 08:01 AM.

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  19. #50
    Distinguished Community Member Jen's Solitude's Avatar
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    Wow what a scary experience! I am glad you are carrying your phone with you and I hope your dizziness is totally gone.

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