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    • #13659
      Debi Wilson
      Member

      Many people are curious about Ocrevus and how people are responding to being on the treatment.

      Can you share how many treatments of Ocrevus you have had and how you are feeling? Are you glad you chose this treatment?

    • #13700
      Cynthia King
      Participant

      I have had my first split dose, and two regular ones with no side effects. I wondered if it truly was working, this past spring I seemed to have taken a turn for the worse, there was a decrease in muscle strength and such. But I worked with a physical therapist and feel like I have regained what I lost. Tysabri was my favorite of them all, it stopped the ms in its tracks and I had two good years while taking it. But the two year limit because I was JC+ meant I had to stop. So, back to Ocrevus. It is nice because it’s only twice a year and you need less MRIs. I see my neuro on Thursday after my MRI, so I can post more regarding clinical information, but I think from a patient compliance point of view it’s the best choice out there.

      • #13701
        Ed Tobias
        Keymaster

        Hi Cynthia,

        Welcome to the forums.

        I was also on Tysabri and am JCV+. However, I was able to continue on it longer by switching to an infusion every other month. Eventually, however, I switched to Aubagio and then to Lemtrada. My neuro feels the benefit/risk ratio is better for it than for Ocrevus.

        I’ve read of some excellent results with Ocrevus and I hope that will be the case for you. PT is also important, no matter what DMT you’re on. I know it’s helped me a lot. (Disclosure: I’m married to a retired PT)!

        Ed

    • #13704
      Debi Wilson
      Member

      Hi Cynthia,
      Thank-you for sharing your experiences! I’m glad Ocrevus is working well for you, please keep us up to date on your continued success! I too like Physcical therapy, I feel it is very important and really helps! Ed you are lucky that you have you own special physical therapist living with you!
      Cynthia, Have you ever tried Ampyra? My Doctor has suggested it to me, I haven’t tried it yet though.

    • #14286
      Debi Wilson
      Member

      Hi Jacco!

      Thank-you for sharing your experience with Ocrevus. Please do keep us up-to-date!

    • #14298

      I am glad to hear that you guys are not having any side effects on Ocrevus because when I get started on it I hope the same is true for me as well.

    • #14299
      Debi Wilson
      Member

      Wishing you the best on your Ocrevus journey, Steve! We look forward to reading about your experiences!

    • #14342
      Cynthia King
      Participant

      I tolerate Ocrevus quite well, I don’t seem to be having side effects.

    • #14343
      Debi Wilson
      Member

      Great news, Cynthia!

    • #14418
      Denise
      Participant

      I just got my second split dose of Ocrevus two days ago. I had no reactions during either of my first two infusions except a severe migraine headache later that night for each infusion. I have been a regular migraine sufferer for years, so I am not sure if the infusions of Ocrevus triggered the headaches. It could have also been brought on by the steroids given before the infusion or even the stress/anxiety surrounding the process too. My regular migraine medication, Relpax, stopped the headaches, but I actually needed several doses, as they kept recurring for about 24 hours. I did notice physical fatigue- I felt as if I had cement blocks strapped to my legs for the first day of each infusion. I was taking Gilenya for about 18 months prior to this and it seemed to be preventing relapses, but my recovery from prior nerve damage seemed to have stopped. My neurologist suggested that I consider switching to Ocrevus. I asked her, “If you were me, would you switch?” and she told me, “absolutely”. I trust my doctor 100%, so here I am. I have read in various places online about severe rebounds after stopping Gilenya, so I am hoping that doesn’t happen. My doctor had me stop Gilenya for exactly one week before my first Ocrevus infusion, so it has been a little over 3 weeks off Gilenya.

    • #14419
      Debi Wilson
      Member

      Hi Denise,

      I am sorry to hear about your migraines, those have to be terrible!

      Thank- you for sharing your experience with  Ocrevus,  your post is very informative and helpful!

      Thank-you for being here and please keep us up-to-date on your progress !

    • #14290
      Ed Tobias
      Keymaster

      Hi Jacco,

      That’s great news about your Ocrevus treatment. (I’m on Lemtrada and I’m doing well on it). As Debi has written, please keep us posted about your treatment is going.

      I’ve visited Amsterdam, but only very briefly during a cruise. The people were so nice and the city is so beautiful that my wife and I want to return for a much longer trip to the Netherlands.

      Your English is excellent. I understand that Dutch is a very difficult language for English-speakers to learn. On the other hand, so many people that we met in Amsterdam spoke English very well. It makes us embarrassed. :-).

      Best of luck,

      Ed

      • This reply was modified 4 years ago by Ed Tobias.
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