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  • PositiveMS
    replied
    Hi,

    I see you've already decided to try Ocrevus. Good for you I've tried Tecfidera, Copaxone and now Ocrevus for the last 1.5 years. I don't regret my decision. I was not afraid of the possibility of cancer either, mainly because if you look at the numbers, it was something tiny like 2% higher in the Ocrevus trial. To me, that sort of said that it could very well have been coincidental, but the company had to report it. Not only that, Ocrevus has almost no side effects compared to some of the other medications for MS out there! I was briefly interested in Lemtrada until I read the side effects of that one. Eeeek! Having said that, I know some people have had great results on it, but the risk factor just seemed too high for my liking. So yes, I've been on Ocrevus for 1.5 years, next infusion in 3 weeks, and I am thoroughly happy with it.

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  • ewizabeth
    replied
    Hello Jade,

    I had my second half dose on July 24th. My first half was about like yours, I felt a bit rundown for a couple of days afterward.

    After the second half dose I didn't get a good day of steroid boost like the first one. I had nearly a week of feeling pretty run down and didn't do much at all. But the second week I started feeling better. The past few days I've had a bit more energy and my mood is improved. I've been getting little things done that would have exhausted me before the treatments started. Also, my GI symptoms have nearly cleared up, and that's a huge thing for me because it has been bad for the past four years.

    Good luck with Ocrevus. I'm more hopeful about this than any I've taken in several years.

    Leave a comment:


  • Jade Divine
    replied
    Completed my first half infusion

    Hi all. I completed my first half infusion 2 days ago, go back for the second in two weeks. I had no problems at all with the infusion, no reactions. Yesterday I felt a little run down, occasional waves of "the chills," or nausea, tired, minor body aches. I chewed mint gum and it took care of the nausea, took some Alleve for the minor aches. Also used some medical marijuana. So far so good.


    I know these are not listed side effects of Ocrevus, but I felt like my immune system was run down or I was getting sick. Today I feel better. I also have lupus and take Plaquenil which effects my immune system so maybe the double hit to my immune system caused me to feel that way. I don't know but wanted to share my experience with the Ocrevus.

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  • Jade Divine
    replied
    Going for it

    Originally posted by Brass View Post
    I have recently completed my 4th infusion of Ocrevus and experience no side effects whatsoever. Last infusion I did without the pre-med solumedrol.

    I had very active MS and Ocrevus was my 4th medication after Copaxone, Gilenya & Zymbryta. After 18 months on Ocrevus my last 2 MRIís of both brain & spine have shown no changes & lesion free.

    Good luck in whatever path you choose.
    Thank you Brass for your response. I have decided to proceed with Ocrevus. My first infusion is August 2, and of course the second one two weeks later. thanks to everyone who responded. it's been helpful. I'll keep you posted.

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  • Brass
    replied
    I have recently completed my 4th infusion of Ocrevus and experience no side effects whatsoever. Last infusion I did without the pre-med solumedrol.

    I had very active MS and Ocrevus was my 4th medication after Copaxone, Gilenya & Zymbryta. After 18 months on Ocrevus my last 2 MRIís of both brain & spine have shown no changes & lesion free.

    Good luck in whatever path you choose.

    Leave a comment:


  • Marco
    replied
    When reading from people's experiences, just remember that people are more prone to put negative things on the internet than positive ones.
    As for side effects, there are potential side effects from the premeds, namely the steroids. There are possible infusion reactions from the dosing. Normally these can be remedied by slowing the infusion rate or giving another round of premeds. Then there are possible post-infusion side effects.

    I am on Rituximab, the precursor to Ocrelizumab, and have zero side effects from the medication. I did have side effects from the steroids they give you before your infusion. Prior to rixtuimab it was a struggle to keep my MS symptoms at bay, but since I started the medication I am a lot more stable.

    I wish you well...

    Leave a comment:


  • Teddy1101
    replied
    Me too

    I am hoping these symptoms are just because of reading all the side effects. Good luck to all.

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  • Jade Divine
    replied
    Oceanpride,

    Thanks for the response. Happy to hear you're having good results with Ocrevus. I'm still undecided. Very excited about the efficacy of Ocrevus. Can't tell if I'm overreacting about their listed side effects. I hope I am.

    Jade

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  • oceanpride
    replied
    Hello. Just got back from a neurological appointment today. Itís been 18 months since the last one. They said i scored the same and/or better on all of the tests they gave me to do. Iím soon due for the third full infusion. They seemed pleased with the results. Iím happy so far that I took it. Iím PPMS so Iíve never taken anything else. This is the only show in town for me. They also said it may take up to one and a half years for it to do its job.
    Iím thankful it came along when it did.

    Leave a comment:


  • Jade Divine
    started a topic Looking for Ocrevus experiences

    Looking for Ocrevus experiences

    Hi all. I'm RRMS and am thinking of treating with Ocrevus. I've tried betaseron, copaxone, and aubagio in the past but found their side effects intolerable. I like the efficacy of Ocrevus but my hesitation is the fact that it "may cause serious side effects, including risks of cancers (malignancies) including breast cancer."

    Has anyone taken Ocrevus and developed cancers? Also I am very interested in hearing about positive Ocrevus experiences.

    Thanks.

    Jade
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