This topic contains 29 replies, has 11 voices, and was last updated by  Quynh-Loan Luong 1 day, 2 hours ago.

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  • #12968
     Debi Wilson 
    Member

    Are you over 55 years old and deciding if Ocrevus is right for you? Or, are you on Ocrevus already?

    Please, share your experiences with us on this MS drug. What are your concerns and hopes for treatment?  If you are on Ocrevus, are you having any side effects? How are you feeling?

  • #13090
     Treva Kirby Adams 
    Participant

    I’m not yet 52, have RRMS, and I began Ocrevus on Dec. 22, 2017. My first full dose was this June 22nd. Thus far I’ve had no side effects, no infusion reactions, and no issues with illness or infections. In fact, I was exposed to influenza and did not become sick. I do have more energy and stamina – I simply feel better and am enjoying a better quality of life. My son is 31 and has been on O since the Opera clinical trial, with great results and no complications / issues. I realize that every person, every body, and every case of MS is unique but for me Ocrevus has been a blessing and I believe it will continue to be so. If I begin to have challenges with illness then I will certainly weigh the pros and cons again and research any new treatments. For now, I am happy with Ocrevus.

  • #13091
     Debi Wilson 
    Member

    I’m very happy to hear that Treva! Thank-you for sharing your story! Please, keep us updated on both yours and your son’s Ocrevus journey. I think it will be inspiring!

  • #13130
     Mahlon B. Dalley 
    Participant

    I really enjoyed reading about this topic. As most with PPMS, I was hopeful about Ocrevus.  I made an appointment with a new Neurologist member of the local MS Center staff who seems to be the go to person with questions about Ocrevus. She was extremely knowledgable and brought to my attention facts that I overlooked in my research on this drug. Number one was that that the oldest person in the clinical study was 55 years of age.  I’m turning 70 next month and of course with older age one is more susceptible to infection which brings up the second fact, that Ocrevus decreases certain B cells (part of the immune system) making one concerned about infection. She also emphasized the fact that in the study for PPMS that showed significant slowing of the disability progression, there was only a 24% less likely  to have disability progression for 3 month and only a 25% reduced risk of worsening on the 25-foot walk.

    I am still weighing the benefits and risks, but with what I have learned from my research and reading this forum, I probably will forego the treatment at least for a while. I certainly hope that those of you that proceed with the treatment that your endeavor will be successful, and I will be awaiting to hear ,your assessment.

    By the way I am glad I have found this forum. I think that it will be instructive and beneficial and I will be exploring the many forums.

     

    • #13156
       Ed Tobias 
      Keymaster

      Hi Mahlon,

      Have you asked your neuro about Lemtrada? It attacks selected B and T-cells (Ocrevus only attacks B-cells). My 70th birthday was ten days ago and I was DXed with MS in 1980. Though I’ve never officially been changed from RRMS to SPMS, I haven’t had a relapse (exacerbation) in, I’d guess, over 15 years. However, I’ve steadily gone downhill to the point where I use two canes and an FES for short distances and a scooter for longer.

      I’m four months past the second round of Lemtrada and, though it’s been a roller coaster at times, I think my symptoms have improved a little.

      I’ve written several columns about my Lemtrada “journey,” which you can find if you go to the main MS News Today website and scroll through my column: The MS Wire.

      Please let us know what you wind up doing.

      Ed

    • #13509
       Ed Tobias 
      Keymaster

      Hi Mahlon,

      How are things going with you? Have you made a decision about Ocrevus yet?

      BTW, I like the picture of you in the saddle. I got back on a horse, a few years ago, for the first time since I was a kid and worked with a riding therapist. It made me feel better physically and mentally. Do you still ride?

      Ed

    • #18599
       Treva Kirby Adams 
      Participant

      I am now 2 years into treatment with Ocrevus. I do well with the infusions and have no side effects. I haven’t had a relapse in this time and although I may have a symptom once in a while they are usually short-term and mild, triggered by temp changes, stress, etc. I just had brain and thoracic MRI’s. I have no new or active brain lesions and the thoracic is stable – most of the original lesions are no longer active and there are no new ones. My son is about 6 years into Ocrevus treatment and doing well. Like me, he occasionally has symptoms but no relapses and his MRI’s are good. I am 52. he is 33.

      • #18605
         Ed Tobias 
        Keymaster

        Hi Treva,

        I’m glad that you’re doing well with Ocrevus, as many are. I’m being treated with Lemtrada and also doing well, I’m happy to say.

        Also, I’m sorry that I welcomed you again today. I see that you’ve been a member of the forums for at least a year, so please forgive the double-welcome.

        Ed

  • #13131
     Debi Wilson 
    Member

    Thank-you Mahlon for sharing your comments! It sounds like you and I agree on waiting a bit for Ocrevus. We are glad you are here, and We hope to see more of your posts or topics in the discussions!

  • #13159
     Debi Wilson 
    Member

    Good information Ed, Happy Birthday late! 🎈

  • #13161
     Jacqueline 
    Participant

    Hope I am not too late….Happy Birthday Ed…

  • #13341
     Anonymous

    Hi. How old were you when you discovered you have MS?

    • #13342
       Ed Tobias 
      Keymaster

      Hi Valeria,

      Welcome to the MS forums. I’m one of the moderators and I hope you’ll participate in many of our discussions.

      In answer to your question, I was diagnosed in 1980, when I was 32 years old. My wife says I had MS symptoms for a few years before that.

      Ed

       

       

    • #13346
       Debi Wilson 
      Member

      I was 53 Valeria, but had symptoms many years before diagnosis. What about you?

  • #13343
     Phyllis 
    Participant

    Yes, I have had 3 doses of Ocrevus (the initial starter 2 doses and one full dose). The first infusion for PPMS was done at age 59 1/2. The first full dose a week after turning 60.  I have also been taking high dose biotin for about one year.  My next scheduled in Ocrevus infusion takes place in December 2018.

    At that time, I will reevaluate my decision.  Thank you for starting this discussion and for your very informative articles.

     

     

  • #13347
     Debi Wilson 
    Member

    Thank-you, Phyllis! I hope you you keep us up-to-date on your progress!

    Did you notice feeling better or worse on Biotin?  Have you noticed any changes so far on Ocrevus?

    Thank-you so much for sharing your journey with us!

  • #13359
     Anonymous

    I discovered 5 years ago when I was 22. I started the treatment right now because I had a baby but basically I didn’t accept to be sick. But now I start thinking about the future and I’m scared. I’m scared not to be able to take care about my daughter for many years. So I just wanted to know how many years I can live my life normally. What’s your experience? How do you live your life after many years with MS?

    Thank you

    • #13370
       Ed Tobias 
      Keymaster

      Valeria,

      I was diagnosed when I was 32 years old. Our son was only 2. I’m now 70, our son is 39 and we have grandchildren who are 2 and 4 years old.

      I worked, full-time, until I retired 5 1/2 years ago. I’ve traveled all over the world for work and for pleasure. I now use a cane and a scooter to help me get around but my life has been good and continues to be good.

      MS is not the end of the world. It effects everyone differently but you can, also, live a good life.

      Ed

  • #14243
     Steven Whitson 
    Blocked

    Yes and yes I am 57 and working on getting started on Ocrevus my doc said it was going to be awhile to get it because of medicare and medicaid paying for it.I have not been on any medication’s for ms in 3 years because none of it seemed to me slowed the progression down.

  • #14245
     Debi Wilson 
    Member

    That is exciting for you Steven,  please keep us up-to-date on how it goes for you and how you feel!

  • #15482
     Steven Whitson 
    Blocked

    So I started on Ocrevus Monday Jan.21,2019 and all went fine with the first half infusion except for a little throat irritation, but I do feel like I have more energy to stand and walk even though I still need a walker and wheelchair to get around but I’ll take what I can get.

  • #15495
     Debi Wilson 
    Member

    Great news,  Steven. Good luck, and please continue to share your journey with us!

  • #15498
     Ed Tobias 
    Keymaster

    Good deal, Steven. Best of luck with your Ocrevus treatment.

    Ed

  • #18570
     Quynh-Loan Luong 
    Participant

    I am 58. I was on Ocrevus when it came out and I was ~55. It didn’t help me. I was downgraded from RMS to SPMS.

    Loan

  • #18626
     Les Whitney 
    Participant

    I’m 57 (ppms) and I have been on Ocrevus for 4 years.I’m so very happy with it ,No decline at all only improvement for Me. Still carry my cane but seldom use it,much more active and I’m getting stuff done.Brain fog gone almost the old me

  • #18786
     OliviaJ 
    Participant

    I turn 65 in another 8 days. I have PPMS, dx’d in 2001. My neurologist seems indifferent so I saw another for a, well, first opinion and he said he wouldn’t recommend it for me for a list of reasons, my age and disability level among them. I’m in a wheelchair, have no bladder or bowel control and my left leg seems to be a dead weight. I hope I am not beyond hope, but it looks like symptom management is all anyone can help me with.

     

    • #18790
       Ed Tobias 
      Keymaster

      Hi Olivia,

      I’m sorry to hear how much MS has taken away from you. However Ocrevus, Lemtrada and Tysabri are three meds that hold out some hope for stopping progression and, in some cases, reversing symptoms. I don’t know if it will happen for you. I’m 71 and began Lemtrada treatments at 69. My disease isn’t as advanced as yours, but I think Lemtrada has helped my bladder and bowel problems a bit. It may be worth raising the possibility of treatment once again with your neuro.

      Ed

  • #18788
     Quynh-Loan Luong 
    Participant

    Hi again!  My side effects were just minor skin infections.  But, Ocreveus didn’t help me. I read on one of the forums that it is more effective with men.   I was switched to Mayzent this month – so far so good and easy too – a small pill a day.  I am 58 and still limp with a walker (spasticity over half of my body, the other half is weak) .  Don’t let them tell you you are too old.  Life expectancy is much longer now.  An early happy birthday to you!

    • #18791
       Ed Tobias 
      Keymaster

      Quynh-Loan,

      Good luck with Mayzent. You’re right, you’re never too old to try to improve your qualify of life.

      Ed

  • #18792
     Quynh-Loan Luong 
    Participant

    Thank you Ed.  Now I have been hoping for FDA approval of the PoNS.

    Loan

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