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    When is the time to stop treatment?

    In recent years, an important question has emerged about the use of disease-modifying therapies (DMT) to control MS: does there come a time when there’s little more to be gained from treatment? It’s an especially timely question during the current COVID-19 pandemic.


    Behind this question are several considerations. It’s well known that the frequency of inflammatory flare-ups (relapses) declines as a person gets older, which may be because the immune response becomes less robust due to aging. It may also be because of the nature of MS itself. Some researchers have suggested that after many years, MS “burns out”, with the level of inflammation and tissue damage declining to what is seen with normal aging (Frischer and colleagues. Brain 2009: 132;1175-1189). Since DMTs primarily target inflammation, there would be less treatment benefit if less inflammation is present.


    Secondly, if there is less benefit, the potential risks associated with treatment may be less justifiable, especially in older people who have other medical conditions and a higher risk of complications such as infections. Thirdly, DMTs have generally not been tested in older people so their safety profile in people older than age 65 (age 55 in some cases) isn’t known.


    Of course discontinuing treatment also has economic implications. Many people like the idea of stopping treatment (no more hassles, no more co-pays), and insurers would certainly welcome a reason to cut off coverage of expensive MS medications.


    Several groups of researchers have started to look into whether some people with MS can stop treatment and the largest analysis to date has just been published (Schwehr and colleagues. Drugs Aging 2020;37:225-235). The study was done by the BeAMS Study Group, which uses computer modelling to estimate outcomes. The model assumed that a person was aged 55 or 70 years, had experienced no relapses in the preceding five years while on treatment (an interferon, Gilenya or Tysabri), and had some disability but could walk unaided (i.e. no cane or walker) for 100 metres. These criteria reflect a person with mild to moderate disease course with little or no disease activity for a five-year period. In that scenario, continuing treatment provided little or no benefit. In such analyses, the benefit is typically measured in units called ‘quality-adjusted life-years’; in this study, the maximum benefit was estimated to be a matter of a few life-days – so scarcely worth the effort.


    An earlier study compared people continuing treatment with those who stopped. The people in this study had experienced no disease activity (relapses or MRI lesions) for at least two years beforehand. Overall, people who stopped did not have a higher risk of disease activity or worsening disability if they were older than age 45 (Hajime and colleagues. Mult Scler Relat Disord 2019;35:119-127). However, people younger than age 45 were at risk of worsening disease if they went off treatment.


    These results are preliminary, but they suggest that in some situations it’s worthwhile to have a conversation with your neurologist about whether you can stop treatment. Certainly, older people (age 60+), who are at higher risk from COVID-19, may be candidates for stopping during the pandemic. It may also be a consideration for people in their late fifties who haven’t shown any disease activity (relapses or new MRI lesions) for several years. However, stopping treatment shouldn’t be done on your own – you’ll need to talk to your neurologist and MS nurse beforehand. And they’ll need to monitor you more closely so they can re-start treatment promptly if your MS flares up again.


    https://msology.ca/when-is-the-time-to-stop-treatment

    #2
    This post is timely for me. I have an appointment for an MRI and a well visit with my MS Specialist next week. That will be one of our conversations.

    However, I'm also considering requesting a switch, instead of just discontinuing. I might look into whether Tekfidera might be more appropriate for me than Copaxone at this point.
    ~ Faith
    MSWorld Volunteer -- Moderator since JUN2012
    (now a Mimibug)

    Symptoms began in JAN02
    - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
    - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
    .

    - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
    - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

    Comment


      #3
      Thanks for the info, Marco.

      The idea that MS 'burns out' has been a controversial one.

      If I understand correctly, this basically refers to the decline of inflammatory relapses after many years with MS and aging.

      The flames of acute inflammation (relapses) diminish, and this could be another way of describing 'burn out'.

      With this perspective, it makes sense (to me, anyway)

      Now it would be fantastic if progression would burn out as well.

      Take Care
      PPMS for 26 years (dx 1998)
      ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

      Comment


        #4
        I stopped my DMT over 3 years ago. I had not had any changes in my MRI's for almost 6 years and I am at an age where burn out could supposedly kick in. I am doing remarkably well without the side effects the meds caused. I am scheduled for another MRI in October.

        Comment


          #5
          Stable MRI

          Hi all
          Had last ocrevus Oct 2019 , next infusion was due Apr 2020. This was cancelled due to COVID. Now I read one is more susceptible to COVID when on med that attacks cd-20? Understand ocrevus is one. I am not a doctor but ìt appears am more vulnerable if taking ocrevus. The other thing I heard is if actively taking ocrevus, and get COVID, you do not produce antibodies. Can someone talk to these medical Issues?
          Am 64 and considering stopping Ocrevus. I

          Comment


            #6
            Originally posted by dann View Post
            Hi all
            Had last ocrevus Oct 2019 , next infusion was due Apr 2020. This was cancelled due to COVID. Now I read one is more susceptible to COVID when on med that attacks cd-20? Understand ocrevus is one. I am not a doctor but ìt appears am more vulnerable if taking ocrevus. The other thing I heard is if actively taking ocrevus, and get COVID, you do not produce antibodies. Can someone talk to these medical Issues?
            Am 64 and considering stopping Ocrevus. I
            I'm also trying to learn more...
            my last Ocrevus infusion was Feb 2020 - I have an appt with my Dr next month to discuss next infusion.

            Comment


              #7
              The co-director of the RMmsC is doing a study/trial on stopping treatment in older msers . The findings will probably be out 2/2022. He has wanted me to stop Ty for years. I am getting infusions every 56 days for around 5 years now and still seem to be doing better following the infusion ??

              Time will tell..we'll see

              Linda

              ps been on Ty since 10/2006
              Linda

              Comment


                #8
                Originally posted by dann View Post
                Hi all
                Had last ocrevus Oct 2019 , next infusion was due Apr 2020. This was cancelled due to COVID. Now I read one is more susceptible to COVID when on med that attacks cd-20? Understand ocrevus is one. I am not a doctor but ìt appears am more vulnerable if taking ocrevus. The other thing I heard is if actively taking ocrevus, and get COVID, you do not produce antibodies. Can someone talk to these medical Issues?
                Am 64 and considering stopping Ocrevus. I
                Short answer: (from June 26 2020 article, NCBI NIH):

                "Therefore, the failure of our patients to produce antibodies to SARS-CoV-2 may or may not indicate a higher risk of re-infection, and further research is necessary. Large studies are essential to conclusively determine whether certain DMTs may blunt SARS-CoV-2 antibody production, and whether this may increase re-infection risk in MS patients."

                Negative SARS-CoV-2 antibody testing following COVID-19 infection in Two MS patients treated with ocrelizumab

                https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7318946/
                PPMS for 26 years (dx 1998)
                ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~

                Comment


                  #9
                  Originally posted by lindaincolorado View Post
                  The co-director of the RMmsC is doing a study/trial on stopping treatment in older msers . The findings will probably be out 2/2022. He has wanted me to stop Ty for years. I am getting infusions every 56 days for around 5 years now and still seem to be doing better following the infusion ??

                  Time will tell..we'll see

                  Linda

                  ps been on Ty since 10/2006
                  Dr. Corboy's study is the one I'm waiting for. My neuro PA brought up the "time to quit Tysabri" at our last zoom appointment. I am 68, but I'm just not comfortable quitting. I'm down to 7 infusions a year, and each one only takes an hour. I'm definitely NOT depending on her knowledge.

                  Comment


                    #10
                    My choice of DMT was Avonex once a week. This week brings to an end my 15 yr. avonex journey. The subject of discontinuing treatment for me came up last year. My neurologist asked if I had ever given thought to stopping Avonex, and I mentioned that I had been researching and reading the study results of stopping after age 60. Long story short, my MRI's have been stable for many yrs., I have mobility issues with my Rt. foot (foot drop), but no other exacerbations that I know of since I was diagnosed in 2005.

                    So, going forward with fingers crossed that I don't have any serious issues.

                    Since my first discussion in early 2019 about discontinuing, my neurologist left the practice so I needed to find another Neurologist quickly during the pandemic. I had my first appointment this week via my laptop with a new Neurologist. During our conversation, I asked him his opinion on stopping treatment, without hesitation he said it was okay to stop. I will still see him periodically, but no more worries about refills, prior authorizations, dealing with the specialty pharm, etc.

                    Yippee!!!!!

                    Comment


                      #11
                      Originally posted by Mamabug View Post
                      This post is timely for me. I have an appointment for an MRI and a well visit with my MS Specialist next week. That will be one of our conversations.

                      However, I'm also considering requesting a switch, instead of just discontinuing. I might look into whether Tekfidera might be more appropriate for me than Copaxone at this point.
                      MRI done. No new lesions since 2018 MRI. No MS activity means Tekfidera would not be effective for me. I went off Copaxone last week after being on a DMD sinc3 2003; I'm on nothing now. Yay!
                      ~ Faith
                      MSWorld Volunteer -- Moderator since JUN2012
                      (now a Mimibug)

                      Symptoms began in JAN02
                      - Dx with RRMS in OCT03, following 21 months of limbo, ruling out lots of other dx, and some "probable stroke" and "probable CNS" dx for awhile.
                      - In 2008, I was back in limbo briefly, then re-dx w/ MS: JUL08
                      .

                      - Betaseron NOV03-AUG08; Copaxone20 SEPT08-APR15; Copaxone40 APR15-present
                      - Began receiving SSDI / LTD NOV08. Not employed. I volunteer in my church and community.

                      Comment


                        #12
                        Discussing stopping Copaxone

                        Hi, Everyone.

                        I hope you are safe and doing well in this new normal.

                        I started discussing with my neurologist last year about possibly stopping Copaxone this year in March at my regularly scheduled follow up. I am 61 and have been on Copaxone for about 6 years. I was diagnosed later in life.

                        But then in December 2019, I started having extreme muscle spasms unlike anything I had had before. I have been on Baclofen for a number of years, and was doing well. But we had to add Oxcarbazepine for these muscle spasms, so its a no go on stopping the Copaxone this year. Have an MRI scheduled in November and we'll see what's going on.

                        Keeping my fingers crossed!
                        Melissa
                        _____________________
                        Symptoms started around 2000, Diagnosed with RRMS April 2014, On Copaxone.

                        Comment


                          #13
                          This was a topic that came up between me and my neurologist last year and after much consideration and weighing of options, I decided to go off my DMT of the time (Plegridy). At my most recent neuro check-up, he says he now wants me to go on Mavenclad for 2 years (apparently it's a 10 day treatment once a year) that will get me 4 "guaranteed" years of being flair-free. I told him I'd think about it but I'm not sure that'd be in my best interest either. I'm going to be 62 this year and am hoping that the 'burn-out' theory is working in my favor.
                          Wendy
                          "There are signs everywhere...."
                          "Life is wasted if it's not lived as an adventure."

                          Comment


                            #14
                            I’m about to turn 50 and have been diagnosed since 94(symptoms for a few years prior to this). I have actually been off everything for about five years since my last bad attempt at taking a DMD. I have always had the most horrible reactions to the meds over the years so I was taking them sporadically-a few months here, a few yrs off, then a few months again then yrs off again. Both of my Neuros eventually found out I can’t tolerate them(or really any kind of medication) to some weird hereditary issue where my liver converts meds into toxins...it’s hard to explain.

                            I definitely know with my experience I’ve been better off of them than on but most especially the closer to 50 I’ve gotten. My flares aren’t as close together as they were in my 30’s/early 40’s. I guess it definitely depends on your system and how your doctor feels about you going off.

                            Again, I’m one of those weird cases that does better off the meds than on them, not to say I don’t have my issues because I definitely have limitations after nearly 30 yrs w/MS but I do know that when I was on the medications I was a mess. My Drs have just decided that despite my not being on them consistently all these years they thought I’d be worse off than I am so they just stopped pushing the issue(also said while my situation is rare, they do know of other patients w/similar reaction to the medications).

                            Comment

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