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    Like Ocrevus but...

    Has anyone stopped DMTS if over 60 and MRI Stable?

    #2
    Hello Dann,

    To me, discontinuation certainly seems worthy of consideration. I imagine that some MSers over age 60 who stop treatment will do just fine but others may not, depending on how active MS becomes, if at all.

    I wonder if Ocrevus is a bit like Tysabri in that it is so effective one can be lured into thinking their MS is not so bad after all, and they may do just as well off their DMT? And, for many it may play out that way, but may not be the case for everyone. So, what to do? IMO, it is pure guess, pure chance. We can only know for certain in retrospect if stopping the DMT was wise.

    With Ocrevus we do know it continues effectiveness for at least 18 months after the last infusion; one early study showed that to be the case.

    For me, I question the wisdom of permanently suppressing the immune system by continuing any powerful immune suppressant, like Ocrevus. To me, it seems that sooner or later a well-functioning immune system will be required to stave off cancer or other serious illnesses.

    My spouse is age 66. She only gets an infusion of Ocrevus when her blood work shows a re-population of the immune cells Ocrevus kills off. But I question even that reduced infusion schedule because it is still permanently suppressing parts of the immune system and I am not sure if doing so will result in serious consequences someday, any day.

    There is no legitimate rule of thumb to go by in stopping a DMT after age 60. There are opinions but little science to inform us in spite of an occasional opinionated neuro who is a legend in their own mind.

    The risk-reward of continuing a DMT after age 60 appears to be a toss-up to me. As such, I am leaning toward a suggestion to discontinue for my spouse but it is a very difficult consideration, as you well know.

    I wish you the best as you deliberate!

    Comment


      #3
      They used to say MS burned out as we aged, then they said it didn't, now they are studying it again

      I am 57 and wonder that myself.

      Have you talked to your neuro about your MS history and any progression to get their thoughts?

      The reality, medical experts really don't know. I figure at some point, I will probably take a risk, thinking that I am past the inflammatory phase of RRMS/SPMS.

      I was leaning toward 62, but will see once I get there and what the latest studies show. For me, that would be 20 years from diagnosis and and 34-45 years from initial onset of symptoms. Thinking that since I didn't get the benefit of early DMT start in my MS journey, I should be past the inflammatory phase.

      Lot of luck. Let us know what you decide and how your journey goes.
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        Originally posted by dann View Post
        Has anyone stopped DMTS if over 60 and MRI Stable?
        There's no magic ball to any of this stuff. Just this weekend a beloved friend of mine
        converted from SPMS not active to SPMS active. She's been stable for years and then boom, a flare up.

        Every MS patient is one flare up from potential disaster at any point in time. My big crushing flare happened in 2012 and permanently changed my life. I will never let my guard down hoping that MS will leave my old bones a break.

        I know there was a study in Colorado that suggests age based discontinuation of treatment is possible. I also know of several MS patients that "aged out" of therapy and are living to regret it. Others do well, but it's an absolute guess for a neurologist to stop treatment solely based on age.

        There are 25 year olds that will never have another flare up with or without treatment. There are also 75 year olds that will have flare ups with or without treatment. I'm 51, but I never plan on going without a medication. For me it's like wearing a seatbelt for a wreck you hope never happens.

        I also believe too many neurologists and MS patients rely too heavily on MRI. Even with a stable MRI disease progression and accumulation of disability can occur. MRI is merely a point-in-time snapshot of your brain. And don't forget MRI, especially 1.5T, is prone to missing lesions.

        Here's a link to illustrate the point: http://www.msdiscovery.org/news/news...more-meets-eye


        I wish you well and hope MS leaves you alone independent of your medication decision.

        Comment


          #5
          Discontinuation of Disease Modifying Therapies (DMTs) in Multiple Sclerosis (MS) (DISCOMS)

          Natural history research in Multiple Sclerosis (MS) suggests that risk of relapses and new Magnetic Resonance Imaging (MRI) changes diminish significantly as people age, especially in MS patients 55 or older. Thus, the need to continue MS medicines that reduce relapses and new MRI lesions may also decrease as people age, especially in those who have not had relapses or MRI scan changes for prolonged times. This study plans to learn more about the safety of stopping MS medication in this population, as compared to continuing on the medication.


          https://clinicaltrials.gov/ct2/show/NCT03073603

          Comment


            #6
            Thanks to everybody. I have MRI 7/13. Has anyone reduced frequency of infusions rather than
            stop altogether?

            Comment


              #7
              Originally posted by dann View Post
              Thanks to everybody. I have MRI 7/13. Has anyone reduced frequency of infusions rather than
              stop altogether?
              Yes, my spouse receives infusions based on blood work rather than the calendar. But this is an issue which must be hashed out between individual patients and their doctors.

              Also, right now we are deliberating about the optimal window of time for the next infusion. Many considerations are entering into that deliberation. For example, some cases studies indicate Ocrelizumab may hinder the development of Covid-19 antibodies. However, sufficient time lapsing between doses may provide the immune system opportunity to form those antibodies. That point is being debated and may become a scientific study.

              We have not made a decision about the next infusion, yet. Last infusion was in January so there is no rush. Based on how quickly B-cells repopulated after an infusion in the past, likely will not be another infusion this year, anyway.

              Best wishes!

              Comment


                #8
                Hi All,
                my Neurologist is the Co-director of the RMmsC in Aurora, CO. A few days ago he told me that a trial he's done on stopping a med when older will come to fruition approx 2/22. I am 71 years old, have been on Tysabri since 10/06. I will wait for the results of this study to see about stopping the med..so far I have said "if it ain't broke don't fix it"!
                Linda
                Linda

                Comment


                  #9
                  Originally posted by dann View Post
                  Has anyone stopped DMTS if over 60 and MRI Stable?
                  Yes, after thinking about it and researching it for the last six months, I asked my new neurologist yesterday what his opinion was to stopping DMT after age 60. Without hesitation, he said absolutely I could stop my weekly Avonex. My last 5 or 6 MRI's had been stable, I have mobility issues with my right foot (foot drop), nothing more over a 15 yr. period. Prior to my decision I read a few articles and studies regarding discontinuing DMT's and all authors basically came to the same conclusion that discontinuing was okay.

                  This is my first week skipping my shot. I am so delighted because even though I've been doing it for close to 15 yrs., I still had pangs of anxiety when I had to do the shot. Fingers crossed that all will go well.

                  Comment


                    #10
                    Thank you for responses. MRI was stable. Did have my ocrevus in Aug. Could not deal with no medicine. Afraid of possibility of worsening. Need more information about stopping medicine after 60. Think will take infusions more than 6 months apart, however, in hopes, my blood work does okay.

                    Comment

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