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Ocrevus use in primary progressive MS

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    Ocrevus use in primary progressive MS

    Hi. My oldest sister has primary progressive MS and is considering starting Ocrevus infusions as suggested by her neurologist. I was just curious if anyone with this type of MS is on Ocrevus?

    #2
    Hello sibling 3.
    I’ve asked the same question in another colomb about a week ago and no one chimed in. I’m primary progress and am trying to get it. Did the blood work and all is ok just waiting for an appointment. You’re sister and I are only 10 or 15% of the MS population so maybe that’s why we’re not hearing anything. It’s a crap shoot for sure but so is MS. Gotta try something
    It was one agains't 2.5million toughest one we ever fought.

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      #3
      Thank you.

      Originally posted by oceanpride View Post
      Hello sibling 3.
      I’ve asked the same question in another colomb about a week ago and no one chimed in. I’m primary progress and am trying to get it. Did the blood work and all is ok just waiting for an appointment. You’re sister and I are only 10 or 15% of the MS population so maybe that’s why we’re not hearing anything. It’s a crap shoot for sure but so is MS. Gotta try something
      Thank you for responding. I figured it would be difficult to get a lot of responses given the rarity of this type of MS. I will post again once i go with my sister to see her neurologist tomorrow.

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        #4
        I’m diagnosed as primary progressive and on Ocrevus. I had the first 2 infusions in June and the next one in December. I had no problems with the infusions, haven’t seen any difference in my MS. Slow progression continues.

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          #5
          I’m diagnosed as primary progressive and on Ocrevus.
          I had my first infusion in May 2017 and the next one in November .
          I’ll have next one coming up next month.
          I had no problems with the infusions, haven’t seen any improvement in my MS. Progression continues 😡

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            #6
            Kmalory1 and brave
            Thanks for replying to this.
            It doesn’t sound very encouraging for me but like to hear it like it is. I think I will try it as I’ve never been offered anything else in 14 years of PPMS. Kinda got excited for awhile but am now falling back to grim reality. You would think you guys would notice something if it worked. Thanks again.
            It was one agains't 2.5million toughest one we ever fought.

            Comment


              #7
              Originally posted by oceanpride View Post
              Kmalory1 and brave
              Thanks for replying to this.
              It doesn’t sound very encouraging for me but like to hear it like it is. I think I will try it as I’ve never been offered anything else in 14 years of PPMS. Kinda got excited for awhile but am now falling back to grim reality. You would think you guys would notice something if it worked. Thanks again.

              Oceanpride
              As you know , it’s hard to say whether I would be worse if I was NOT on Ocrevus ?
              I personally last week, brought it to my Neurologist’s attention that I think my MS progress has been faster since being on Ocrevus !!
              Don’t know what to blame? Is it linked to Ocrevus , MS progress has turned to faster pace or because I have been Under too much pressure and stress ( sort of depress) due to going on disability and early retirement against my wishes😡
              MS caused me to give up a career that I loved .

              With all that said still I think it worth giving Ocrevus a try. No other meds proven effective for PPMS
              Unless you are doing fine on any other meds .

              I failed Avonex, Rebif, copaxon and Tysabri (JV positive) .

              I hope this helps.

              GOOD LUCK

              Comment


                #8
                According to Genentech’s web site, “People taking Ocrevus were 24% less likely to have disability progression for 3 months.” That’s not exactly stopping progression in its tracks for most of us.

                Like Brave, over the past 15 years I’ve been on a bunch of meds: Avonex, Tysabri, Tecfidera, now Ocrevus. My neurologist doesn’t get hung up on labeling MS as RRMS, SPMS, etc. He says it’s all the same disease.

                There’s a great PPMS blogger called WheelchairKamikaze. Google should find him. I need to start a new thread about his latest drug company post.

                Comment


                  #9
                  Hello Brave. Yes thank you your post helps. It seems that everything from the weather to stress to colds and flus and just about anything else you can think of causes us to go down hill. Hopefully the Ocrevus is slowing it down 25%. Even the infusion part seems to knock the daylights out of a lot of patients so I’ve read. It would be a first Medicean for me so I won’t have anything to compare it to. I’m sorry about your having to retire early. I sometimes think that it’s my work that’s kept me going this long I’ve been lucky to have been able to adjust as I’ve progressed
                  Kmallory1 yes I read wheel chair kamacozi all his blogs. I understand business pretty well but I just have to think that the discovery of a cure would have to be some quick money for who ever discovered it. No business can turn their backs on that. At least I hope not. ??
                  It was one agains't 2.5million toughest one we ever fought.

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                    #10
                    Thanks for posting the truth. I am PRMS (5%er) and had my second infusion on Thursday. I have not noticed any difference. I am going to give it time, even though I was told I should feel something. I like others here feel like I am just continuing downward. Anyone with Primary and Ocrevus that it is working for you?
                    I feel Ocrevus is kicking my butt. It’s only been 20 days but when does it get better?
                    You think it’s difficult to find someone with PPMS and Ocrevus, try PRMS. :-).

                    Comment


                      #11
                      You would think this forum would be so busy that you wouldn’t catch up. Don’t seem the case. I figure 5% of 2,500,000. Is 125,000 people with pRMS and 10% PPMS equals 250,000 people. It’s very nice that some chime in. Good luck sutle improvements over time would be huge. We’ll hope for that. Fingers crossed
                      Good luck.
                      It was one agains't 2.5million toughest one we ever fought.

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