Announcement

Collapse
No announcement yet.

Discontinuing DMD as we age?

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

    Discontinuing DMD as we age?

    Hello,

    Has anybody discontinued taking their DMD in the 55+ Age group and is doing well, being stable, without getting relapses or showing new lesions on their MRIs?

    I am looking for advice as I am in this age group and my new neuro suggested the possibility to discontinue my MS meds.

    Thanks!

    #2
    Hi butterfly- this same question was brought up last year with many weighing in. The question however was directed for those at age 65.

    You can find the post here- https://www.msworld.org/forum/forum/...e-escalate-dmt

    Hopefully, others will reply now with new insights and experiences.
    Take care!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

    Comment


      #3
      Seasha, thank you so much for this link. I did attempt to search past posts prior to posting and couldn’t find anything. Appreciate your reply!

      Comment


        #4
        I stopped my DMT in 2017 and have done very well since then. I have had no flares and no new lesions on my MRI. I was quite stressed at first but now I realize that for ME it was the right thing to do.

        Comment


          #5
          I am interested in this as well at 57. There is a clinical trial looking specifically at this. It started in April 2017 and is estimated to complete February 2022.
          https://clinicaltrials.gov/ct2/show/NCT03073603

          I had previously read info from the Cleveland clinic suggesting that people over 60 who have been clinically stable and have shown no new lesions are good candidates to stop DMTs. But it should be an individual evaluation.

          I will probably wait until the study is complete and then have serious discussion about it. Seven years of Avonex and Rebif and I am in 10th year of Tysabri, still every 4 weeks since JCV-. In anticipation of getting my body used to no infusions, I am going to discuss spreading them out to 5 weeks, then 6 weeks, then 8. I do feel it when an infusion is delayed, so nou sure how I will feel off it. Will it become a quality of life issue?

          Lots to think about. Did your neuro provide you with any insight into why stopping may be ok for you?
          Kathy
          DX 01/06, currently on Tysabri

          Comment


            #6
            Hi Pennstater,

            I was diagnosed in 2008, have had a very mild case of MS without any relapses or new lesions since. Just had a brain MRI that showed no significant progression compared to my previous one in 2016. I am very stable and will be turning 60 this year. 7 years on Avonex and for the last 7 on Gilenya.

            However, I do have some issues with my hip and right leg, and will have the appropriate spine / cervical MRIs to rule out lesions in that area. It could just be related to old age and arthritis, which I have had for a few years now. Once the MRIs come out clear, we will be discussing coming off Gilenya. So I am trying to do some homework on that in advance.





            Comment


              #7
              Thanks for the update butterfly. I did forget to add that the Cleveland clinic criteria was age 60 and no new lesions/progression in last 5 years. Looks like you fit that criteria.

              Let us know what you decide to do post MRI. Lots of luck.
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                I'm trying to remember exact dates.

                I discontinued (I think) in July 2019 at age 57, after being lesion-free for five years. I have declined some ,but at a slower rate than prior to dietary and lifestyle changes that I made in 2018.

                I attribute my decline in the last year to covid and less exercise.

                I'm scheduled for an MRI next month to see if there have been any new lessions. I might have had one follow up MRI since discontinuing?

                I'll update this if I find inaccuracies.
                ~ 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


                  #9
                  I started and stopped Ocrevus at 54 due to side effects, and it was the only DMT I tried. Eighteen months later, I do have some daily symptoms, but overall my health is better than it was a couple years ago. The neuro only agreed to let me drop DMT's because my last MRI was clear, and I'm under strict orders to contact him immediately if anything major pops up.

                  Comment

                  Working...
                  X