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    Medication

    Is anyone taking MS meds in their 70's. I understand meds aren't given over 60.

    #2
    What a good question! I don't know the answer; I will be watching this post.

    Comment


      #3
      It is really up to the individual and neurologist, at least in the US. It is possible this decision varies by country. They used to say MS burnt out after 60 and any progression was related to prior damage, then they said that wasn't true and DMTs should be taken if RRMS. It has swung back and forth. And now there are drugs that target people who are not RRMS. I believe there are studies looking at it again.

      I know there are people in their 60s and 70s at my infusion center still getting Tysabri or Ocrevus. Some were diagnosed earlier in life, some just diagnosed in their 60s, but were showing signs on MRIs of active disease.

      I had this conversation with my Neuro at last visit, since I am turning 59. He said at the present, no recommendation to stop. But there are a few new drugs in the pipeline that if approved, may be a good way to go if I was tired of infusions. So we are supposed to revisit the conversation each appointment to see if his answer would change based on research and trials.

      My guess is that it will not be one answer fits everyone. The trick is determining who should remain on the DMTs. Marco's post on a possible blood test to determine the risk of relapse in the next 4 years could help in this analysis.
      https://www.msworld.org/forum/forum/...-test-to-dx-ms
      Kathy
      DX 01/06, currently on Tysabri

      Comment


        #4
        I just turned 70. My neurologist says that at this age our immune system has slowed down and that it may not be necessary to continue taking MS medication as long as there are no changes on the MRI for several years. I haven't decided what I will be doing. Waiting for my MRI in November to decide. Interested in hearing from others on this topic.

        Comment


          #5
          My neurologist who is a MS specialist at a large center also indicated there are mixed thoughts on stopping after long term stability vs continuing. He indicated he would support whatever I decided to do. I'm in my late 50s and planning to continue with medication, possibly change to another type if needed, at least until my retirement.
          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


            #6
            This is a topic relevant to my current situation. My neurologist says that she would like to take me off of Tysabri because I’ve been on it so long. I’m 69. Right on the edge of this.

            I really think I would be completely paralyzed by now if I hadn’t gotten on that DMT. Right after my diagnosis I was getting a flare every two weeks.

            I really want to stay on it because I’m willing to take the PML risk in order to combat this disease. Since the information is not conclusive that MS stops progressing, to me, the risk of MS progression and rebound flares is something I don’t want to take. As long as the nurses can find a vein to put it in I will show up at the infusion site.

            I will be 70 in February so I’ll keep you posted.

            Comment


              #7
              The biggest question I will struggle with and there is no sure answer: am I stable because I have been on Tysabri 11 plus years, or am I stable because my MS ran it's course?
              Kathy
              DX 01/06, currently on Tysabri

              Comment


                #8
                I went off s few years ago. I think, at the age of 57.

                At that point, I'd had zero flares or new lesions in five years and was likely in SPMS.
                ~ 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 don't remember exactly how old I was when I stopped using meds, but it must have been in my 50's. Copaxone began to leave me with weird side effects and I was doing okay anyway. So between me and my neuro we decided it was time to stop. I hate to think how much that stuff costs now! If I could just find the right meds to treat symptoms I'd be happy.
                  Marti




                  The only cure for insomnia is to get more sleep.

                  Comment


                    #10
                    Originally posted by palmtree View Post
                    This is a topic relevant to my current situation. My neurologist says that she would like to take me off of Tysabri because I’ve been on it so long. I’m 69. Right on the edge of this.

                    I really think I would be completely paralyzed by now if I hadn’t gotten on that DMT. Right after my diagnosis I was getting a flare every two weeks.

                    I really want to stay on it because I’m willing to take the PML risk in order to combat this disease. Since the information is not conclusive that MS stops progressing, to me, the risk of MS progression and rebound flares is something I don’t want to take. As long as the nurses can find a vein to put it in I will show up at the infusion site.

                    I will be 70 in February so I’ll keep you posted.
                    I haven’t taken Tysabri since 2010. I had high dose chemo in a study for MS and was in “remission” for 10 years. Things have slowly crept back in, until this flare in April. Now at 57 I need to decide how to get myself back up after total Vertigo spins and now dizziness with double vision are keeping me from work and driving.
                    Steroids helped some of the other symptoms, but the dizziness and vision changes continue. I have an MRI scheduled for C-spine next week. The Headaches and pain seem to be centered on back of neck. If MRI confirms active lesions on c-spine, I’m thinking Tysabri may be able to get me back to being able to work again. I need to keep medical insurance until I’m 65 if possible! Ugh! Tysabri as my first drug after nothing for 12 years, hope my neuro will let me.

                    Comment


                      #11
                      Originally posted by Raceya View Post

                      I haven’t taken Tysabri since 2010. I had high dose chemo in a study for MS and was in “remission” for 10 years. Things have slowly crept back in, until this flare in April. Now at 57 I need to decide how to get myself back up after total Vertigo spins and now dizziness with double vision are keeping me from work and driving.
                      Steroids helped some of the other symptoms, but the dizziness and vision changes continue. I have an MRI scheduled for C-spine next week. The Headaches and pain seem to be centered on back of neck. If MRI confirms active lesions on c-spine, I’m thinking Tysabri may be able to get me back to being able to work again. I need to keep medical insurance until I’m 65 if possible! Ugh! Tysabri as my first drug after nothing for 12 years, hope my neuro will let me.
                      What were the study results? Is the chemo something you could do again if the data indicates it was what resulted in the 10 year remission?
                      Sorry you are struggling now. Please keep us posted.
                      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


                        #12
                        Originally posted by Raceya View Post
                        I need to keep medical insurance until I’m 65 if possible!
                        If employed we only need to make it to 63.5 years old by using COBRA.
                        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


                          #13
                          Originally posted by Jules A View Post

                          If employed we only need to make it to 63.5 years old by using COBRA.
                          Lol- 63.5! You’re right! Crawl across that finish line.

                          Comment


                            #14
                            The chemo study (it’s a rebooting of white cell count), can only be done once. It’s 3 times the amount of chemo a cancer patient gets for 3 days. Then you wait until your white cell count is at true zero. Once at zero you are given Nupegen shots in your stomach until your femur starts making new baby white cells. You stay in the hospital until you get to a certain white cell count. It’s basically same protocol as bone marrow transplant.
                            They will only let someone do it once.
                            So, now I need to get back to work instead of sitting in bed spinning. Hoping Tysabri works for me like it did back then.

                            Comment


                              #15
                              Originally posted by Raceya View Post

                              Lol- 63.5! You’re right! Crawl across that finish line.
                              YES!!

                              “Life is not a journey to the grave with the intention of arriving safely in one pretty and well preserved piece, but to slide across
                              the finish line broadside, thoroughly used up, worn out, leaking oil, and shouting GERONIMO!!!”


                              ― Bill McKenna
                              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

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