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Thread: Ocrevus Check-In

  1. #21
    Distinguished Community Member agate's Avatar
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    Glad it went well and you're back here, willing and able to tell us about it, Dar!

    It sounds pretty stressful, and any new experience in an unfamiliar place is stressful, IMO. If you'd been there many times before, it would have been easier but my impression is that you hadn't?

    You may have been told to "stay well hydrated" beforehand? If not, you might want to ask if limiting fluid intake for a while before the next infusion would help with the bladder situation. Just getting back and forth to the bathroom would be tiring and stressful.

    I have a feeling that all of this walking definitely made this whole thing much more difficult:

    As for the time spent at the infusion center, it was longer than expected because of an attendant who took me to the wrong place initially. She meant well but she totally exhausted me with the needless walking from one place to another. The first thing I decided was that I would be arriving in one of their many wheelchairs sitting outside as soon as we pull up. The nurse brought me to the car once the infusion ended. That was very helpful.
    I'm so glad you're rapidly figuring out ways of making this easier.

    Was the lunch edible? And was Curt able to be there?
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  3. #22
    Distinguished Community Member BBS1951's Avatar
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    I am so glad you posted and that you got through your first infusion, so much to learn that first time. Your next one may be less stressfull as a result. Good job

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  5. #23
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    Thanks for checking in, Dar. So glad it went well. The unknown is stressful.
    Last edited by ssusan; 10-17-2017 at 11:47 AM.
    Be the person your dog thinks you are

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  7. #24
    Distinguished Community Member Howie's Avatar
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    Hi DAR, and thanks for posting your experience. Like anyone in medicine will tell you, it takes a few weeks for your body to adjust to any new medication. But the end result is to make the patient feel as "normal" as they can. Hang in there, and you will start to feel MUCH better.
    Roswell was a gift.

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  9. #25
    Distinguished Community Member Pegakafarmgirl's Avatar
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    Good for you DAR,,glad you are handling this as good as you are,,
    " Don't outsmart your common sense"

    Peg

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  11. #26
    Distinguished Community Member Jen's Solitude's Avatar
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    Well I finally got the energy to do some research and discovered they do warn of "fatigue" and "tiredness" as possible side effects. Apparently I experienced the extreme version of those two side effects. After 4 nights of misery I started to feel better yesterday afternoon and today I am feeling 85 percent like myself.

    I thought I was used to dealing with fatigue and tiredness as that seems to be my default position, but after this experience I realize things can easily become much worse depending on the medication. I am hoping the next infusion won't be so hard on me, but if it is at least I know it will probably only last for 4 nights or so.

    Agate, Curt was able to sit in a chair. The rooms were small and a little crowded but it was still better than having to sit up. The lunch was edible although I was served lasagna even though the nurse told them to give me a diabetic plate. I asked her why they would give me white noodles and she said she has no idea why they make the decisions they do. Oh well, at least the portion wasn't that large even if it wasn't the healthiest choice for me.
    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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  13. #27
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    So glad you are feeling better. Now if you can just keep going onward and upward.
    Virginia

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  15. #28
    Distinguished Community Member agate's Avatar
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    My hat is off to you people trying Ocrevus. You're willing to spend an entire day being infused with a comparatively new medicine that has known side effects, and you're willing to do this repeatedly.

    It's a shame that the infusion center couldn't at least supply a diabetic meal.

    Peg and Dar, and anyone else taking Ocrevus,

    EDITED TO ADD: Other people taking Ocrevus? Wasn't Tweeker going to start on it?
    Last edited by agate; 10-18-2017 at 11:05 AM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

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  17. #29
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    Agate, I can see why they would try it. Remember the link to the interview with the Doctor about this drug. It is suppose to be a really great drug that will all but stop further progression and according to that interview there were almost no side effects.

    Maybe the next infusion for Dar, the side effects will get better. If it does do what that video showed, people just starting on it should have a much better future.

    I asked the NP about it when I saw him in August and he said "no" for me, but it was due to my age. I think it can cause the white blood cells to go down in some people and then they can get an infection. It was something to that affect.
    Virginia

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  19. #30
    Distinguished Community Member Jen's Solitude's Avatar
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    I see my neuro Nov 7th and I'm hoping to get more details about my lowered immune system.

    I don't remember ever having a lower or upper respiratory infection although I've seen Curt suffer through them. I have had sinus infections in the past so will be on the look out for that.

    I'm especially curious about the destruction of B cells caused by the Increvus and I'm wondering if the risk for infections is lower once the infusion is 2-3 weeks old.

    I find the destruction of B cells most interesting and would like him to explain it to me in lay-men terms. My neuro is very good about taking the time to answer all questions and giving detailed information pertaining to all his patients on Ocrevus, which is very reassuring.
    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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