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This topic contains 13 replies, has 9 voices, and was last updated by  Ed Tobias 1 year, 6 months ago.

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  • #10966
     Faith 
    Participant

    Hi guys,

    I’m supposed to be starting Ocrevus in a few weeks, and I’m so conflicted. I’ve been doing so much research about the possible long term side effects as well as the infusion reactions. Can anyone on Ocrevus fill me in how how they’re doing?

    Thanks so much,

    Faith

  • #10969
     Kristin Johnson 
    Participant

    I’m not on Ocrevus, but if you haven’t seen this video, it is well worth your time.  If you watch, watch the Q & A also.

     

    • #10976
       Curt 
      Participant

      I started Ocrevus last Oct 31 and am hold because, as well as bringing my CD19 B cells to zero (as is usual), it took my t cells down drastically too (both CD4s & CD8s). My CD4s went down to 204 a range where it’s time to start taking measures to prevent opportunistic infections. In addition to my neurologist, I am now seeing a hematologist and an infectious disease specialist. Now it’s a waiting game to see if my blood counts normalize.  DMTs sure are fun!

      • #11012
         Donna 
        Participant

        I am probably starting ocrevus in a few weeks.  Prior to starting my hematologist wants me to have a CT scan which he says is for obtaining a baseline.  Also he is doing a complete blood workup because I have elevated monoclonal B cells already.  They have been watching these levels for about a year.  I have had prior chemotherapy because of breast cancer 2001-2 which may account for the elevated B cell activity.  I’m nervous about the testing and the infusion, but I think it makes sense to go forward.  We’ll see.  anyone else with elevated Monoclonal B cells?

  • #10970
     Wendy 
    Participant

    I’m also in the insurance waiting game right now to begin Ocrevus.  Have only been diagnosed since November 2017 and only had three treatments of solumedrol to “stop” the exacerbation that took me to the ER then.  Anxious to hear others responses to this. My doctor told me it would STOP progression and I would lead a symptom free life.   Thoughts?

  • #10973
     Kristin Johnson 
    Participant

    It might be worth your while to join MSWorld Forum and read the Ocrevus thread under Medications and Treatments.  There are a lot of people there discussing this drug.

  • #10977
     Darius Harris 
    Participant

    I am slowly starting to appreciate Ocrevus.

    I did rebif for about 8 months, It was horrible. The only reason I tried it was because “Ocrevus” was 4 days from dropping when I was diagnosed. I actually was labeled a nut by my neurologist because I raised my fist in celebration upon hearing the news. I wasn’t happy about having it, I was happy to finally have a cause for my years of lost sleep and weird life/health occurrences.  But to answer you inquires, concerns… Its actually starting to work for the good now, 10 days after the 2nd infusion. They do 2 initially to titrate you (opposite of ween)

    I waited a year and did the rebif in the interim thinking after being the go-to for over 25 years they had to have adjusted and evolved it into a great option for some. It might be, but Im not one of them. Almost killed me, made me worse. I am now bouncing back.. thought I never would. I just knew I was headed for a wheelchair… or diapers because I barely made it to the bathroom all the time on that mess… It took me from ambulatory to very assisted. Made me wonder about going on and suicidal… lucky I have aspergers, that Got me through. I wasn’t so much suicidal as I was sick of tomorrows. Todays bad enough, i see no change coming and do not wish to repeat it.

    Anyway, ocrevus improved my core-strength instantly (after the infusion 3hrs) and I could finally hug my wife instead of her holding  me up. I was abit sad after the initial 3 days because I took a turn for the worst but bounced back normal as I had been in a year…. Then after the 2nd I figured I’d be back walking and was. No side effects, no sexual crap, nothing.

    I think this is the one. It got me out of my 9 month long “episode” and I highly recommend it. I have done enough autistic level study to feel superior, in thinking than my specialist. I as maybe you have done, studied maybe 8hrs a day for a year. With that said, I would like to feature your question on my 1 day old blog, DrivingMSdaily.com – Along with my response maybe. Thank you

  • #10983
     Sharon 
    Participant

    I’ve been on Rituxinab which my neurologist said is just like Ocrevus without the scare. I’ve had 3 infusions so far, each 6 months apart. First 2 are full dosages and the rest are half the amount. Has anybody heard of these 2 meds being compared?

  • #10987
     Kristin Johnson 
    Participant

    I heard of a study where the two were compared, and the results showed no real difference in efficacy, with Rituxin being slightly better tolerated.

    • #11013
       Donna 
      Participant

      yes, my neurologist and hemotologist said they are very similar

  • #10988
     Ed Tobias 
    Keymaster

    My neurologist prefers Lemtrada to Ocrevus, for most patients. She says the risks for Ocrevus are greater than for Lemtrada, the rewards for Lemtrada are greater than for Ocrevus and Ocrevus, having only been approved about a year ago, still needs more real-world study.

    Here’s a facebook post from a neurologist who seems to agree. Note this quote near the end of his detailed post: “The warnings on Lemtrada are overdone, and those on Ocrevus underdone.” 

    Lemtrada vs. Ocrevus. I have been asked to explain the major differences between Ocrevus and Lemtrada, including risks…

    Posted by Advanced Neurosciences Institute on Saturday, June 24, 2017

     

  • #11001
     Faith 
    Participant

    I really appreciate all of your input. I’m having a very difficult time deciding whether to start this treatment based on everything I’ve researched. So thanks so much for taking the time to weigh in on this. If anyone else has any experience on this drug , your input would be much appreciated:)

  • #11016
     Nick Main 
    Participant

    I was part of the initial study for Retuxin and have been on Ocrevus for about a year so my relationship with this form of medication have lasted (off and on) for nearly ten years. It was a game changer for me. I went from a very aggressive form of primary progressive to regaining most of my abilities from the initial attack to not taking any drugs for years.

    It’s tough on your body, yes. For me, the disease was much worse.

  • #11072
     Ed Tobias 
    Keymaster

    Faith,

    Here’s a little more info to add to what you’ve gathered.

    5 MS Patients Across US Talk About How Ocrevus Has Changed Their Lives

    Please let us know when you make your decision and why you decided what you did.

    Ed

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