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    Advice?!

    I was on Copaxone for 3 years before having my children when I was only on IVIG. Ready to get back on a medication now. Currently in the middle of a relapse with 7 active lesions. I know Copaxone is a 1st line medication but since it did well for my a few years ago am hoping to return to it. Any advice?

    #2
    The older medicines are the least effective. But they also have the most data from a safety and side effect profile. From your other posts, your neuro seems to be leaning towards the more effective medicines in Tysabri and Rituxan.

    It really comes down to your own comfort with risk, assuming insurance is not an issue.


    My personal opinion is to take the more effective medicines, improving your MS odds. But for others, the side effects risks are scarier than MS.

    It is a tough decision and one only you can make after educating yourself on the options, discussing with your family. It is really important though to make an educated decision.

    Good luck.
    Kathy
    DX 01/06, currently on Tysabri

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      #3
      @pennstater thank you for all of your replies and guidance. I’m really struggling with this and it’s causing me a lot of anxiety. You’re right the dr. Is heavily leaning toward Tysabri or Rituximab.he said giving me the Copaxone would be bad medicine. I’m very risk averse generally so the side effects of the medications really scare me. Hearing your story and success makes me feel more at ease. I’ve just been on a google rampage lately which isn’t helping. I know I have to end up on one of the two medications. Waiting on JCV test is results now to determine which one.

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        #4
        Have you seen the "sticky chart" posted here? It compares the DMTs side by side. I found it very handy. I even printed it and took it with me to my neuro appointment when deciding which med to take. I ended up with Ocrevus. I was like you, Googling up a storm trying to research all I could about each med. Let us know what you choose! Best of luck to you!
        DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

        "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
        - 2 Corinthians 4:16

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          #5
          Here's the sticky thread with chart smalltowngirl mentions - https://www.msworld.org/forum/showth...omparing-DMT-s

          Good luck DCat23!
          1st sx '89 Dx '99 w/RRMS - SP since 2010
          Administrator Message Boards/Moderator

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            #6
            Thank you @smalltowngirl & @seasha. I will let you know where I end up

            @smalltowngirl- how are you feeling on Ocrevus? Any side effects good or bad?

            Comment


              #7
              Originally posted by DCat23 View Post
              Thank you @smalltowngirl & @seasha. I will let you know where I end up

              @smalltowngirl- how are you feeling on Ocrevus? Any side effects good or bad?
              I had nausea and dizziness for several days after the first infusion, but it stopped suddenly yesterday and I woke feeling GREAT. It’s the first time I haven’t felt “bad” since I had my relapse and got diagnosed. I get the second half on Friday, so I’m happy to post and let everyone know how it went.

              Ask lots of questions. Read as much as you can. I figure, the more prepared you are, the better!
              DX 3/2018; started Ocrevus 3/30/18 (EDSS 2.5)

              "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day."
              - 2 Corinthians 4:16

              Comment


                #8
                "the dr. Is heavily leaning toward Tysabri or Rituximab.he said giving me the Copaxone would be bad medicine. I’m very risk averse generally so the side effects of the medications really scare me."

                JMHO, but from my point of view, and possibly from your doctor's also, Copaxone presents the greater risk compared to Tysabri or Ocrevus. IMO, a risk averse person would choose the more effective meds because the risk of MS getting worse is so much higher on any of the less effective meds.

                I realize Copaxone works for some people, however, the mathematical probability is quite low compared to Tysabri or Ocrevus.

                I have been involved with MS as a caregiver for 36 years and the biggest mistake I have observed over that time is this... the failure to treat MS in the most effective manner early in the disease process leads to the greatest disability and deepest regret (after it is too late to treat accumulated disability). Nerves may remyelinate, particularly early on, but if they are demyelinated long enough, they die and are dead forever. Function is not regained in that case.

                Gosh, treatment decisions are tough with this damn disease! All the DMT's have shortcomings. After considerable study and consultation we all take our best guess and roll with it.

                Please remember, risk is a two-sided coin... there is risk in what you do, and risk in what you don't do. We may consider a med with less side effects as less risky but it isn't less risky if it isn't decreasing disease progression. JMHO.

                As a side note... personally, I consider all the orals as having far more frequent serious side effects than Ocrevus or Tysabri (tysabri on extended dosing regimen has very little, if any, risk of PML even in those who are JCV positive).

                The oral DMT's for MS are clearly not in the same league of effectiveness as O or T; not even close. And, the orals experience wicked side effects more frequently than O or T. Not in everyone, but the orals have serious side effects much more frequently than Ocrevus or Tysabri on dose extension.

                I wish better choices were available and in time there will be.

                Best wishes as you consider your options.

                Comment


                  #9
                  Thank you @myoak. Sound advice. Awaiting the JCV test results so hopefully am negative and my doctor will agree to an extended schedule. I think I’ll feel more comfortable then with Tysabri. You’re right that there’s risk either way and more so with the less effective treatments. I’ve been in a google binge lately and have scared myself quite a bit. Rationally I know I will need to go on one of these two treatment. I have two little kids I need to take care of. I was hoping to try some alternative therapies while doing Copaxone (oxygen therapy, ldn, etc) and I felt like my hope was taken away to try those options first. But the medications have good results from what I’ve read so I will try to get ahead of it. Like you said I don’t want to regret not taking action when it’s too late to have an impact anymore. Thanks again. -d

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