Announcement

Collapse
No announcement yet.

Starting new DMT and am nervous

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Starting new DMT and am nervous

    I'm starting Ocrevus on Monday and honestly, I'm nervous about it.

    Part of it is the whole unknown of how my body will react to this drug. I still work and in fact am scheduled to work a full day on Tuesday. With past DMTs I've learned the hard way to not concentrate too much on the common side effects but instead educate myself about the uncommon/rare effects because that is probably what I'm going to get.

    But the bigger picture is more troublesome to me. I thought I had moved out of the Land of Denial a long time ago but it turns out maybe not. After 15+ years to little to no activity, the past 5 years have been an explosion of activity. Until it came up on my FaceBook memories I didn't realize s it has only been 5 years since my first major flare. That one stopped me dead in my tracks. Since then I've had 3 more flares. That's 4 in 5 years - 3 of which involved my optic nerve.

    My eye doc (a neuro-ophthalmologist) recommended this or another DMT but my neuro feels this drug is the best available to help preserve my vision. Since I enjoy my vision I'm going with their recommendation.
    DX 10/2008
    Beta Babe 12/2008-07/2013
    Tecfidera 07/2013-01/2018
    Aubagio 01/18-09/20

    Ocrevus 09/20-present

    #2
    Lots of luck to you with Ocrevus. I thought about switching from Tysabri, but since stable, why rock the boat? But that would be my choice if I have to switch.

    As for relapses, smart to switch and try to head it off. If any consolation, studies in the past have shown if relapses are ON, it usually lends to a less progressive disease course.

    I think it is normal to be nervous when switching treatments. Hopefully, it is a non-event for you and you wake up Tuesday wondering why you were so stressed. Again, lots of luck!
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      I wish you well on Ocrelizumab. I have been on Rituximab (closely related to Ocrelizumab) for 5 years and doing extremely well on it.

      Here's some breaking news on the vision front:

      The team analyzed the use of high-efficacy DMTs, including Tysabri (natalizumab, marketed by Biogen) and rituximab (a therapy used off-label in MS), and also of DMTs considered of low-efficacy or potency, such as interferons and Copaxone (glatiramer acetate, by Teva Pharmaceuticals).

      Their analyses revealed that in RRMS patients, treatment with high-efficacy DMTs was associated with a slower rate of nerve cell loss in the ganglion cell–inner plexiform layer (GCIPL) of the retina, compared to low-efficacy DMTs.

      https://multiplesclerosisnewstoday.c...-atrophy-rrms/

      Comment


        #4
        Originally posted by pennstater View Post
        If any consolation, studies in the past have shown if relapses are ON, it usually lends to a less progressive disease course.
        That is very good news!

        I also had an ON relapse right before I was dx and didn't know what was what dx but the majority of my sx leading up to my dx were mobility related. I've had 1 mobility related relapse. That being said I believe I've had more damage to my vision than my mobility.

        I pray this med will help me retain my vision.
        DX 10/2008
        Beta Babe 12/2008-07/2013
        Tecfidera 07/2013-01/2018
        Aubagio 01/18-09/20

        Ocrevus 09/20-present

        Comment


          #5
          Thank you for the link!
          DX 10/2008
          Beta Babe 12/2008-07/2013
          Tecfidera 07/2013-01/2018
          Aubagio 01/18-09/20

          Ocrevus 09/20-present

          Comment


            #6
            Disclaimer: I've been on Ocrevus for about 2 years now; just had an infusion last week.

            Originally posted by Toomnyhats View Post
            I'm starting Ocrevus on Monday and honestly, I'm nervous about it. Part of it is the whole unknown of how my body will react to this drug.
            FWIW, Ocrevus has a low side-effect profile. Side effects exist, but they're unlikely.

            Originally posted by Toomnyhats View Post
            After 15+ years to little to no activity, the past 5 years have been an explosion of activity.
            Explosions aren't fun!

            FWIW, I had a similar course, many years w/o problems. And as others have indicated, ON is a "good" sign. In my first major MS attack I lost my vision for about a week. For many years heat or raising my body temp could bring on ON symptoms. Today (decades later) my ON has changed and does different things -- something to consider and pay attention to.

            Considering your Ocrevus infusion, take consolation in a couple of factors. As I said, the problem with side effects is relatively low. But also relish in the fact that it's considered one of the top 2 most effective DMTs.

            For now, it's time to learn a lot about MS and to ensure you're "4 for 4" in doing what you can to battle this damned disease. And one good source to start is this doctor's YouTube channel. He's a mainstream MS-specializing neurologist who enjoys making YouTube videos. He has a series of videos on Ocrevus that you'll likely find interesting.
            59M / RRMS / Dx1987 / Ocrevus

            Comment


              #7
              Originally posted by Toomnyhats View Post
              I'm starting Ocrevus on Monday and honestly, I'm nervous about it.

              Part of it is the whole unknown of how my body will react to this drug. I still work and in fact am scheduled to work a full day on Tuesday. With past DMTs I've learned the hard way to not concentrate too much on the common side effects but instead educate myself about the uncommon/rare effects because that is probably what I'm going to get.

              But the bigger picture is more troublesome to me. I thought I had moved out of the Land of Denial a long time ago but it turns out maybe not. After 15+ years to little to no activity, the past 5 years have been an explosion of activity. Until it came up on my FaceBook memories I didn't realize s it has only been 5 years since my first major flare. That one stopped me dead in my tracks. Since then I've had 3 more flares. That's 4 in 5 years - 3 of which involved my optic nerve.

              My eye doc (a neuro-ophthalmologist) recommended this or another DMT but my neuro feels this drug is the best available to help preserve my vision. Since I enjoy my vision I'm going with their recommendation.

              I know the feeling about being nervous about starting a new medication. I've had my share of adverse reactions to different medications. I had a rare (and life threatening) one to Rebif after being on it for 2 1/2 years, and another interferon 1a for several months before that. No warning, just happened out of the blue after my injection one night. Six years later, I had another really bad one to Gilenya.

              How'd it go today? Hope everything went well!

              I'm also on Ocrevus. Made me dizzy and lightheaded during first few infusions, but that was it. Good thing the chairs recline! Have been on it close to three years now.

              Best of luck to you!
              Last edited by KoKo; 09-22-2020, 05:40 AM. Reason: poster request
              Kimba

              “When you change the way you look at things, the things you look at change.” ― Max Planck

              Comment


                #8
                I had my first infusion almost 2 weeks ago. The actual infusion was uneventful (I just sat back and read my book). The only side effect I've had so far is from the Benadryl and IV steroids - I was ssooo tired after the infusion that it's a good thing I wasn't driving (steroids make me drowsy).
                I have my second infusion on Monday and am not anticipating any problems. This time I don't have to work the next day so I have some leeway if any problems crop up.
                Thank you all for the information and encouragement. I appreciate it!
                DX 10/2008
                Beta Babe 12/2008-07/2013
                Tecfidera 07/2013-01/2018
                Aubagio 01/18-09/20

                Ocrevus 09/20-present

                Comment


                  #9
                  Glad everything went pretty well Toomnyhats. Here's hoping the second infusion is uneventful! Best of luck.
                  Kathy
                  DX 01/06, currently on Tysabri

                  Comment

                  Working...
                  X