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had 1st Ocrevus infusion yesterday

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    #16
    I think reporting of DMT side effects probably varies considerably by doctor. Two weeks ago I was sent home without my Ocrevus infusion by the nurse practitioner because of the possibility that a recurring UTI might still be in the works.

    The next day I got a call from Genentech about missing my infusion. Its now in their database as an adverse event, with follow up calls scheduled. It was obviously reported by the MS center immediately.

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      #17
      Originally posted by kmallory1 View Post
      I think reporting of DMT side effects probably varies considerably by doctor. Two weeks ago I was sent home without my Ocrevus infusion by the nurse practitioner because of the possibility that a recurring UTI might still be in the works.

      The next day I got a call from Genentech about missing my infusion. Its now in their database as an adverse event, with follow up calls scheduled. It was obviously reported by the MS center immediately.
      I'm sorry your infusion did not come off as planned. Hopefully, things will get back on track quickly.

      I agree wholeheartedly that reporting side effects varies considerably from doctor to doctor.

      Also, I want to correct my previous post and insert a critical omission which I will highlight in the following paragraph...

      "The one caution I would urge is from my household and goes as follows... for those who respond well on Tysabri the effect can be so good that it lures you into thinking your MS is not so bad, after all. Therefore thinking, if you switch DMTs, you will continue being fine relative to MS w/o having exposure to PML on Tysabri. However, you may NOT respond to the switched DMT as well, PLUS, what are the real risks of the new DMT?"

      One of the banes of this site is the inability to make simple corrections like the one above. You have to do a new post or go through an administrator which has occasionally taken a couple of days in the past. I appreciate the administrators we now have and appreciate the job they all do.

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        #18
        Originally posted by NoraS
        The neuro feels it's in my best interest to continue with the Ocrevus, and we'll just deal with anything else if it happens.

        I go in for Part 2 of the first dose next week, but because of my reactions he's putting me on oral Benadryl and steroids today, with an optional sleep aid for after. He believes that my hyperness (is that even a word?) last time was caused by the double dose of steroids they gave me after the reaction, rather than the Benadryl

        Hi Nora,

        How'd it all go? Do hope you had a much better experience the second time!
        Kimba

        “When you change the way you look at things, the things you look at change.” ― Max Planck

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          #19
          Sorry all! I thought I'd posted before this. The 2nd one went off without a hitch! They checked on me more often, but there were no problems at all.

          The Ocrevus rep just happened to call me that afternoon and asked about everything. When I told her about the issues the first time she transferred me to their division that documents those things.

          I spent a good 15 minutes covering everything I dealt with, how they treated it, and so on. I think he wound up documenting everything about me except the size of my feet! Whether the Ocrevus works for me or not, I've been impressed by their staff.

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            #20
            I'm sorry you had such a rough time :-(

            As for location - I am a "hard stick" as the nurses say - but I just always politely say that I know it might end up faster/easier for them to do the back of the hand/wrist - but that honestly leads to me being in discomfort for the entire time (hours) as opposed to if they can just get it into the upper arm by the elbow which I don't feel at all after a few minutes.

            They are always willing to spent the few extra minutes getting the IV started in my arm.

            I hope you next treatment goes better.

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