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Who is switching to BG-12 (Tecfidera) and why or why not?

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    #46
    I've been on Tysabri for 60 months, I'm JC+, my last blood draw shows I clock in at 4.9 on the JC scale and they don't
    want that measurement over .9.

    So... Tecfedera here we come.

    ~D

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      #47
      Tecfidera

      I switched from Copaxone (used it almost a year) and am now on Tecfidera (BG-12) for 3 weeks, 2 weeks of full 2 x 240mg maintenance dose. So far, so good. Don't miss the daily injections. My legs do have the flushing side effect, but it is diminishing and will hopefully fully subside in two more weeks. I'm very hopeful this will do its job well until something better comes out, or a cure is found for RRMS.

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        #48
        Originally posted by msesq View Post
        I am. I'm on Tysabri now, I was on Rebif for 7 years then switched. I love Tysabri, but I recently found out that I'm JCV+. My doc wants me to switch. At first I was reluctant but now I'm on the bandwagon. I initiated the insurance review stuff with Biogen today.

        Alternatively I have a friend who has been on Avonex for years and she has no plans to change (even with the idea of going from injectable to oral).

        Thoughts?
        I did Rebif for about a year.Didn't like side effects.I've been on Tysabri four years.I like Ty but have PML concerns so I'm going to switch to Tecfidera.It all depends on what is covered by insurance.
        Without hope there's nothing.

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          #49
          Originally posted by Jrtkahle View Post
          I have been doing well on Rebif (no flare ups) but still get injection site reactions and would prefer a pill. Also, there is some evidence of an impact on disease progression. I have filled out the paperwork for BG-12.
          You say there's evidence of disease progression.For Tecfidera?
          Without hope there's nothing.

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            #50
            Originally posted by ms man View Post
            You say there's evidence of disease progression.For Tecfidera?
            I think he meant avoidance of disease progression. (?)

            For me, Tec has better stat quotes than copaxone for preventing relapse. For Example.

            Please correct me if I am wrong

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              #51
              Originally posted by Willow63 View Post
              I think he meant avoidance of disease progression. (?)

              For me, Tec has better stat quotes than copaxone for preventing relapse. For Example.

              Please correct me if I am wrong
              Oh.
              Without hope there's nothing.

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                #52
                I am interested in Tecfidera. I am currently taking Rebif and have forever. It has worked well for me but recently the anxiety/depression issues are getting to be too much. So we are talking about making some changes. First I am going to take a reduced Rebif amount and couple that with Lexapro. I go back in three months and we will see how this has worked-if I am feeling better.

                Right now I am a little nervous about switching meds because except for the depression/anxiety, things have been ok. And the shots-- I have just done them.

                What I WANT and what I get to do may be the bottom line for me. My insurance doesn't cover Tecfidera and I will be Medicare age next year and it certainly does not cover it. So we will see what happens........ I may end up on nothing......

                lydialou

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                  #53
                  @Lydia

                  Get off rebif! I was on it and I couldn't stand the side effects. The night sweats, depression and stiffness was slowing down my rehab from my attack in 2011. I wanted out and reading about then BG-12 and other MSers saying great things about it back in 2011 so I stayed on Rebif. My 1 neuro wanted me to start Gilenya but those site effects sounded worse then Rebifs. What was left? Tysabri... I may go on maybe in a year or 2.

                  If my blood-work shows liver, kidney, WBC issues I will go to Tysabri.

                  I guess I am sticking to a 5 year plan. Through all the phases of Tecfidera it was about 5-6 years in the making and the only side effects were kidney, liver, flushing so if I can last a couple years I will be happy then maybe go on Tysabri by then hopefully the next big thing will be out- anti-lingo-1
                  I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                  Bill Hicks

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                    #54
                    Durgastiger-You know I have read about side effects from Rebif and sometimes I wonder what my life would be without it. I wonder if the depression/anxiety, tiredness and so forth that I experience is from that. Hmmm???? I have taken it so long that I can't remember life before Rebif.

                    Then I also wonder if I am just doing too much!!!

                    Thanks for the thumbs up!

                    lydialou

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                      #55
                      Originally posted by allHailye2 View Post
                      i'll be asking my neuro about tecfidera at my next appt. i've been on rebif for 13 years now and it's getting harder and harder to do.

                      it's not so much the site reactions, but the knots it's formed under my skin. just tonight i stuck myself and the needle went in, but the med wouldn't.

                      i'm so tecfidera ready.
                      Oh me, too! Icky painful knots everywhere. After 8 years of Rebif shots, I'm down to two small injectible spots on my upper butt. One time I had a terrible reaction in my left thigh, a huge hard disk formed and I could barely walk from the pain. Thought I had killed my poor leg.

                      But, having said that, I'm still nervous about switching to Tecfidera, since I have done fairly well on Rebif. Nervous... but mostly excited.

                      I'm going to see my nuero today, to tell her my choice! Here's to a long, flare-free and full-brained life!!!
                      Jam
                      DX'd MS 8/17/05
                      God never closes a door without at least cracking open a window.

                      Comment


                        #56
                        @Lydia

                        It is a decision that you will have to make. I'm not sure where you are in your progression but the only way we can demand change as a group is to move towards the next great thing. Sending a clear message to R&D companies that we will leave you for something new.

                        Interferons are old horses that have served their purpose but the companies truly learning and developing better MS treatments are here and in the pipeline as we type.

                        We have to be our own advocates! I felt great being off of Rebif for a month + now. More energy, decrease in stiffness, "depression" and those flu-like symptoms and oh yeah injections of needles so I won't mention I was on Copaxone also and that was short lived once I heard they were the ones halting my precious BG-12 from coming out.

                        I would recommend the 30 day starter pack and see how you feel. Read through the posts for common side effects and decide for yourself.

                        Your med is only 1 weapon in your utility-belt!

                        Keep us posted on your decisions and this website is full of useful resources mainly its' members!

                        In unity
                        I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

                        Bill Hicks

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                          #57
                          I was only on interferons for about 6 months (Rebif then Avonex), and I could hardly believe the difference once I came off of them. I had energy, I felt healthy, I was happy again. I didn't notice the decline while I was on them,but gracious I noticed the benefit of coming off.

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                            #58
                            Thinking About Switching from Betaseron to Tecfidera

                            I was diagnosed with MS about 10 yrs ago. I have been on Avonex, Rebif, Copaxone, and currently Betaseron which I have been on for about 5 years. Have had 3 pretty major relapses back to back after having my last child 3 yrs ago but nothing major since (just tingling in my legs on and off). Obviously I want to switch because I am tired of doing injections...I look like a spotted leopard! Also my MRI has been getting progressively worse. My last MRI said I have moderate to severe worsening of lesions. My neurologist was very concerned and wanted me to go on Tysabri but I wasn't sure that I wanted to go on it because of the PML. We decided to wait until Tecfidera came out. I have an appointment next week for a prescription. Still I am nervous because it is a new medication but apparently Betaseron is no longer helping me much. Anyone go from
                            Betaseron to Tecfidera? If so, what has your experience been? Did you have a wash out period?
                            I am so glad I found this forum

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                              #59
                              Originally posted by msesq View Post
                              I guess I'm in group 2, with a caveat. I'm not happy with my treatment only because of the PML risk. I would stay on Tysabri if I hadn't tested JCV+. I'm still not 100% happy with the decision to switch, especially since studies have shown that Tysabri is the most effective DMD.
                              My Neuro says that Tec is only 5o% as Ty but being JVC- I'm probably switching.
                              Without hope there's nothing.

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                                #60
                                @JamCakes

                                what did your neuro say when u saw her?
                                i saw my dr this week and i'm making the change. i stopped my rebif and just waiting for pills now.
                                MS dx's 2000
                                Tysabrian

                                ¤ fate is not just who's cooking smells good, but which way the wind blows ¤

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