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    WALKING AND TECFIDERA

    My walking ability has really decreased since starting Tecfidera. My legs are so weak and toes are dragging. I have been on Tecfidera for about 3 months now and with each day my walking is worse, yet my MRIs are unchanged. Anyone else experiencing walking problems since starting Tecfidera?

    #2
    When I was on the 120 mg dose, my walk, stiffness and balance was so much better. But 1 week after my 240 mg my walk got really bad. I am only taking 240 mg 1 time a day until my stomach gets used to it. I think my walk is a little better once and awhile but this is just weird. Kind of scared to start the other 240mg.

    Did they do trials on people? Did any of them have this side effect? Were their stomach issues as bad as some people's now?

    Guess I should have waited to start this medicine till I saw how others did on it. My doctor was really excited about this med but now I'm kind of like why?

    Since some people are not taking the recommended dose is it still working?

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      #3
      RE: WALKING AND TECFIDERA

      That is very interesting- I just took my first 240mg dose of Tecfidera at 8:00 this morning, after completing the seven days of titration at 120mg.

      I noted his past week my walking and balance has been way off, and today I am also having issues. I actually broke down three days ago and bought a cane.

      Please keep us posted and I will do the same- this imight really be an issue. I will also try to get a hold of my neuro and do some further research. Good luck.

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        #4
        Why are these side effects not known? They had trials right? What if I made a bad descion taking this?

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          #5
          Have you guys checked on maybe adding Ampyra? It helps with walking.

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            #6
            I've had over 60 Tysabri infusions and am considering Tecfidera because of PML concerns.The posts on this thread really worry me.I really like Tysabri.I'm just going to follow what my Neuro suggests.
            Without hope there's nothing.

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              #7
              RE: WALKING AND TECFIDERA

              As with any drug, it, too, went through years of testing to finally get FDA-approval. I'm not necessarily going to jump to the conclusion that the walking problems are surely caused by Tecfidera, as it was not a reported or known side-effect (as of yet, and that could change) during clinical trials. I think the Internet can bring people with similar concerns together and can make it feel like its a bigger issue than it really is. Or, I'm totally wrong and we are seeing new side effects and the drug gets pulled in six months..who knows. I'll keep those of you following this thread posted on my progress. So far, no (other) side effects noted at all from taking Tecfidera.

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                #8
                I also noticed my balance seeming worse when I upped to 240. I already use bilateral support, now that doesn't even seem enough at times. But it does subside after a couple of hours so I'm thinking it's just the initial shock the med does to my system.
                Take Care,
                SpeckledBrain

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                  #9
                  Originally posted by ms man View Post
                  I've had over 60 Tysabri infusions and am considering Tecfidera because of PML concerns.The posts on this thread really worry me.I really like Tysabri.I'm just going to follow what my Neuro suggests.
                  I had about 5 years of Tysabri myself but I'm extremely JC +. I started Tecfedera 30 days ago and my walking and balance have declined too. It seems whenever you start one of the new meds the side effects become the new normal I'm also taking Ampyra, my walking is much worse without it, I hate this crap!

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                    #10
                    Originally posted by finee9 View Post
                    It seems whenever you start one of the new meds the side effects become the new normal I'm also taking Ampyra, my walking is much worse without it, I hate this crap!
                    I am so sorry to read this. I started taking Tec a week ago.. I only had one episode of flushing.. nothing with the stomach yet. But when I woke up this morning I just felt "weaker" all over. I want to attribute that to the heat spell we are experiencing and not Tech. Please keep writing on the board to let us know how you are doing. I wonder what the Neurologists are saying about the weakness and balance issues?

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                      #11
                      Originally posted by Dreams008 View Post
                      My walking ability has really decreased since starting Tecfidera. My legs are so weak and toes are dragging. I have been on Tecfidera for about 3 months now and with each day my walking is worse, yet my MRIs are unchanged. Anyone else experiencing walking problems since starting Tecfidera?
                      Hi Dreams008,

                      Sorry you are having weak legs, etc. What DMD did you switch from?

                      I went from Copax to Tec. I feel better. I am exercising more and feeling less fatigue. Sometimes I overdo it and have to chill.

                      Could it be summer climate or something else? I only mention it in hopes that you get better.

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                        #12
                        Just finishing Week 7 and have noticed no difference in walking or balance. Just more fatigue. Could be the AZ heat.

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                          #13
                          I've been on Tec for 2 months and I am more fatigued than when I was on Copax. I haven't noticed any difficulty walking; although my body does ache all over.

                          I'm trying really hard to exercise more and keep moving so I don't get stiff.

                          Comment


                            #14
                            Wow, right there with Finee

                            I switched from avonex to Tec in mid april, have been on ampyra for over a year now. At about two weeks I was doing great (compared to where I was with Avonex!) There were a couple of days in the middle I thought this was a wonder drug as my walking and gait was so much better.

                            Thought it might be a washout period euphoria. However after 2 weeks on full dose my walking and gait declined, significantly. Called my neuro as all indications was a major relapse, no new issues just significant problems with current right leg and right arm.

                            Requested a pulse pack or solumedrol series, he opted for the steroid pulse pack. Helped some but I am nowhere near where I was, with avonex I had 4 bad days and then squeezed out 3 good days, now I seem to be on all bad!

                            My annual MRI is this month, going to wait and see what that shows and review this and next ops with my neuro.
                            Diagnosed 9/2010, copaxone 10/10, avonex 10/12

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                              #15
                              Started week 7 today. I notice my walking is weaker the last week or so, however it could be due to the heat.

                              My neuro had me do a 3 week washout after Copaxone before starting Tecfidera. So, that's 3 weeks without my security blanket. Also, she said, based on the clinical trials, they (whoever they are) estimate it takes about 10 weeks on Tec to get maximum effectiveness (more or less, hard to tell without knowing the parameters of the individuals in the clinical trials - things are so individualistic.)

                              Anyway, 3 weeks without DMD + 10 (?) weeks on new-fangled DMD = 13 weeks crapshoot and possible increase of and/or new symptoms! It's pretty much the same odds when switching between any of the DMDs. Just an interesting thing to contemplate.

                              I sure would like to read some feedback from some of those clinical trial folks!
                              Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

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