Announcement

Collapse
No announcement yet.

Discontinuing medication

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

    Discontinuing medication

    I was wondering if it is ever recommended for a patient to discontinue taking medication. After 5 years of taking Tecfidera I have not had any relapses or changes in the MRI. Before taking Tecfidera I was on Copaxone and Gilenya with long periods of no medication in between changing medications. During all of this time since 2012 I haven't had any new problems. I am now 67 and in very good health.
    Any thoughts??

    #2
    Glad to hear you are doing well. There are some studies looking at whether as we age, is it okay to stop taking DMTs.

    Years ago, they said MS burns itself out. Then there were studies that said that wasn't the case. Now, they are looking at again and tying to see if they can determine what type of patients it may be safe to stop.

    We never know if it is the meds stopping relapses or just good fortune with our disease course.

    I had asked my neuro this. He recommended against stopping, but did say we would revisit later. I am 56. He did ask me if I stopped and had a bad relapse that changed my quality of life, how would I handle? Would I say I made the best decision I could at the time and let it be or would I look back and blame myself.

    It really is a risk assessment. What are you comfortable with? I would definitely discuss with your neuro.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Discontinuing medication

      pennstater

      I would definitely be very unhappy with a relapse that could change my active life style. My neurologist and I talk about this all the time. It's so hard with this disease to know if medication is actually keeping the disease quiet. I certainly don't mind taking medication because I have no adverse side effects from it. The cost is prohibitive but I have been fortunate to get assistance. Not sure what I would do if I had to pay thousands of dollars per month for the medication. When you reach medicare you no longer qualify for the low copay offered by the pharmaceutical companies. There are assistance programs but you need to do a lot of homework and re-enroll every year.
      Thanks for your response.

      Comment


        #4
        Originally posted by rsinger View Post
        I was wondering if it is ever recommended for a patient to discontinue taking medication. After 5 years of taking Tecfidera I have not had any relapses or changes in the MRI. Before taking Tecfidera I was on Copaxone and Gilenya with long periods of no medication in between changing medications. During all of this time since 2012 I haven't had any new problems. I am now 67 and in very good health.
        Any thoughts??
        Hi rsinger

        Recent discussions on this topic here, if you're interested:

        https://www.msworld.org/forum/showth...55-MS-patients

        https://www.msworld.org/forum/showth...p-taking-a-DMD

        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


          #5
          Discontinuing medication

          Thanks for all the great information. It really is a very difficult decision to make. No one can tell you for sure what will happen since it's not even clear if the medication is preventing relapses. It would be so easy as with other diseases like high blood pressure or diabetes because the treatment has a direct and clear outcome on results. With MS if you have a serious relapse that leads to a disability going back on treatment doesn't reverse the damage.
          It's the nature of the disease.

          Comment


            #6
            Originally posted by rsinger View Post
            Thanks for all the great information. It really is a very difficult decision to make. No one can tell you for sure what will happen since it's not even clear if the medication is preventing relapses. It would be so easy as with other diseases like high blood pressure or diabetes because the treatment has a direct and clear outcome on results. With MS if you have a serious relapse that leads to a disability going back on treatment doesn't reverse the damage.
            It's the nature of the disease.
            I agree 100% and hate the uncertainty that comes with MS!!

            For me if it was well tolerated and I had assistance to pay for it I would probably continue and re-assess if/when something changes but of course that is a personal decision.
            Best wishes with whatever you decide.
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

            Comment


              #7
              Discontinuing medication

              Jules A
              I agree with you as well. May as well keep taking the medication if it is well tolerated and affordable. I enjoy being active and healthy so why take a risk.

              Comment


                #8
                A couple thoughts...

                The infusions are covered under Medicare under major medical, and with a supplement, your cost will be negligible. My medical insurance went from $12,500 a year to $3600 when I joined Medicare. Just saying...

                Aaron Boster has a few good ideas...https://www.youtube.com/watch?v=4PrxbRPJ61A

                Comment


                  #9
                  I guess I'm getting in this discussion a day late.

                  That's a question I'm already asking myself. I'm 57. I'm not ready to push for going off medication yet. But, with my MS specialist's approval, I've been down to 2-3 x per week for copaxone instead of three x every week. And lately, it's probably usually 2, never 3.

                  I, also, wouldn't want to open the door to a serious relapse that would change my lifestyle, but I wonder if a med is doing anything at this stage of my disease.

                  Basically, I guess I have no answers for you; just similar questions.

                  I'd recommend discussing it with your neuro.
                  ~ 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

                  Working...
                  X