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A little scared

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    A little scared

    Hi everyone,

    i havr two questions for anyone who wants to give me advise.

    I am going to start 0CREVUS ON JAN. 31ST and i am nervous because I don't do well with MS meds. so I am looking for somebody to just share there experience with this new drug. Second I am moving my bowls a lot more than normal for me and i don't know what to do any more. If you would like to experience i would greatly appreciate it! Thank you

    Hi diguilio,

    Many here have been on Ocrevus longer than I (I started last July and am due for second dose this week). Iím RRMS and generally healthy and active. People wouldnít know I had MS unless I told them.

    My experience so far with Ocrevus has been great. Infusion was well tolerated with no side effects. Itís like normal life except now I donít have to deal with the regular interferon injections & associated side effects. I havenít been sick yet, either (knock on wood) and I took the flu shot in October like I always do.

    Some on the site have mentioned fatigue as a side effect after several months, and Iím sure others taking this DMD can give you additional perspective.

    Many have expressed concerns about cancer data from the trial. My Neuro mentioned last week that the latest data is showing the cancer seen during Ocrevus trials is just consistent with general population cancers. Talk to your Neuro about it if youíre concerned though.

    I hope your experience is good, post your experience on the Ocrevus forum here to let us know how it went.


      thank you

      thank you for sharing your story


        Have you seen there are 2 more responses from your other post?

        Good luck to you and let us know how it goes!
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator


          I've undergone 3 infusions with Ocrevus, the first 2, then the one 6 months later. I've heard of some others that have had some minor side effects, but not me. Compared to Copaxone, Ocrevus is a joy.

          Symptom-wise, I've noticed an actual improvement in the tactile sensitivity in my numb hands -- that was a pleasant surprise. I was shocked that in my last neuro exam I could clearly feel the coldness in the tuning fork test. It's clear Ocrevus is doing something.

          I've also noticed that cuts on my hand heal much slower (it is a powerful immuno-suppressant). Needless to say, I'll avoid people with colds.

          Since I firmly believe that in most cases knowledge is power, here's a link to one doctor giving some of his thoughts about Ocrevus in a few short videos.
          59M / RRMS / Dx1987 / Ocrevus


            A couple of more thoughts about your upcoming Ocrevus infusion. Your neurologist may or may not opt to give you some benedryl and steroids (typically prednisone) in your IV before giving you the Ocrevus. The relatively small dose of prednisone was a blessing in terms of energy level for the next day or two. Depending on your tolerance for those drugs you may or may not want them.

            For more information, this video on Ocrevus by a doctor at the Rocky Mtn MS Center goes into some stats and the charts in it give a good idea of how it compares to other MS medicines both in terms of effectiveness and side effects.

            Regarding your bowels, have you tried varying your water intake and/or the amount of fiber you eat? As one who typically battles with constipation. I'm jealous.
            59M / RRMS / Dx1987 / Ocrevus