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Coming up on third full infuson

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    Coming up on third full infuson

    Hi,

    So I haven't been on this site in.....a really long time! I'm coming up to my third full Ocrevus infusion at the end of August (1.5 years) and I thought I'd share my experience. That, and I have a lull in my workload today and am slightly bored, haha.

    Here are my thought on Ocrevus after almost 1.5 years. I am SO glad I made the switch to this med. I am so much stronger than I used to be on Tecfidera or Copaxone. For me, the change is awesome. It was all so gradual that I can't pinpoint exactly when things got good, but they have improved a lot. I have a lot of freedom back. My legs are still spastic, but they feel really strong. I swim twice a week, and now I don't feel tired the day after swimming. My balance is way better, and I don't feel shaky anymore. If it wasn't for the spasticity, I would feel 100% back to normal. I'm excited to continue on this med.

    I still take Fampyra but I am curious to see if I can stop taking that altogether. We'll see!

    #2
    Thanks for sharing. I am really happy for you that you have not only remained stable, but actually experienced some improvement! Hope you continue to feel well.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      That's awesome! I hope you continue to feel well.
      The future depends on what you do today.- Gandhi

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        #4
        I have nothing bad to say about Ocrevus either; I've been on it over a year.

        And as someone who did Copaxone for more than a year, I'm shocked that people are still on that DMT. Not only the barbarism of sticking yourself and those welts and such you'd get, just the hard science is that in ~30% of people Copaxone does absolutely nothing -- to me that screams that Copaxone should be relegated into "retirement" status.

        In this non-doctor's opinion, there's no valid reason to use Copaxone unless a patient has severe intolerances to every other DMT out there. Copaxone's efficacy is just too low.
        59M / RRMS / Dx1987 / Ocrevus

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          #5
          Welcome back PositiveMS! So glad to hear you are doing so well and have shown some important improvements

          I wish for you more improvements in your future!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #6
            Thanks for the update. This is encouraging. I had my 2nd full dose one month ago. I guess for the most part... other than a few bouts of fatigue and spasticity... Iím doing ok on it.
            It was one agains't 2.5million toughest one we ever fought.

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              #7
              Thanks for the support guys
              Golgotha, I agree with you on Copaxone. The one year I was on it was not good, I had three big relapses and I was stressed out all time with injections. If I had to do it again, I wouldn't. I feel like it may have made me worse, to be honest.

              Ocean Pride, good to hear form you again my Maritime friend! It took me a while to really feel concrete benefits from Ocrevus. The first year was a bit of a roller coaster, but now I feel so stable and good. Hang in there!

              Comment


                #8
                Originally posted by PositiveMS
                If I had to do it again, I wouldn't. I feel like it may have made me worse, to be honest.
                That's my opinion too. I was on no DMT before Copaxone, so my neuro wanted me on something ASAP. When they started talking about PML risk they did a poor job relating stats about that and the horror stories of that are no doubt scary. So Copaxone was an easy sell -- and I'm not squeamish about giving myself a needle.

                Of course, the fact that Copaxone does nothing in a significant amount of patients was not mentioned.

                Since that time I've been on a kick to pull my head out of my butt and get serious about learning about MS.
                59M / RRMS / Dx1987 / Ocrevus

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                  #9
                  Oscevus newbie

                  Thanks for posting Positive MS. I was searching for experiences on Ocrevus and yours is so helpful. I have my first infusion on August 2. I, too, was on copaxone and it was awful. I do believe I got worse on that medication. So I am hopeful that my experiences will be as good as yours.


                  Jade

                  Comment


                    #10
                    Originally posted by Jade Divine View Post
                    Thanks for posting Positive MS. I was searching for experiences on Ocrevus and yours is so helpful. I have my first infusion on August 2. I, too, was on copaxone and it was awful. I do believe I got worse on that medication. So I am hopeful that my experiences will be as good as yours.


                    Jade
                    I hope you have a good experience too! It was a bit rocky after my first infusion, but it got better. and then better. I don't get affected by humidity much anymore either. I used to hide in my apartment when it was sunny out in the summer. Now I routinely take my cane or walker down to the grocery store and back, whether it's 20 degrees or 30 degrees. It hit me last week that I managed to walk the 5 blocks home in 30 degree sunshine. I never would have been able to do that before. It takes a bit of time, but I am so pleased with the effects of this medication. Best of luck

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