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WALKING AND TECFIDERA

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    #46
    Wow, I switched from rebif to tec cause the 44 shot stung bad. But after starting tec I feel worse. Now I have vertigo problems bad and tired and weak which I have not had before. Cognitive thinking is worse to. After reading this I think I will go back to rebif. It worked good other than the pain of shot.

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      #47
      Tecfidera

      I went from taking Copaxone for 2.5 years to now recently using Tecfidera with minimal side effects - maybe slight flushing and that is it. I have to say I do feel better and balance and walking issues have improved enough for me to notice. I was already taking Ampyra and take 5000iu vitamin D and vitamin B12. I also exercise daily which includes foot drop exercises and leg toning. I hope to continue to feel good on this drug and hope that you do too. Positive thoughts prevail!

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        #48
        I think tec has made me worse

        I've been taking tec since late May. No side effects, was fabulous for first three months then had major (walker needed, fell a couple times) relapse. Did the solumedrol and taper, very slow to recover. Now my left leg is like a bendy stick. I'm going to stop taking tec for a month and see how I do. Calling neuro tomorrow to discuss, but my mind is made up. I am done with the whole med roller coaster.
        Maggie
        Diagnosed 1992
        Copaxone 2001-2007 (ok, not great)
        Rebif 2010-2012(horrible!)
        Current Tecfidera(too soon to tell? Major relapse though).

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          #49
          I was on Tecfidera from April until mid-October when, after talking to my neurologist and reporting that I felt more tired all the time, my gait was worsening, my legs (esp right) felt extremely stiff and more numb, and I was getting saddle anesthesia again, she ordered MRIs on my brain and spine.

          Turns out, while on Tec, I developed about 6 new lesions and several other lesions were enhancing. She pulled me off and we're waiting for my JCV test results to entertain going on Tysabri. Am very hesitant to start Tysabri but feel like I'm running out of options.

          I got a second opinion from another neurologist who said Copaxone might be an option and she's open to prescribing LDN for symptom management. Am thinking I'd like to try LDN on its own since, so far, DMDs (I failed on Betaseron before Tecfidera) haven't worked for me at all. Having said all that, Tecfidera seems to work for many and it was easy for me to tolerate it (despite it not being effective for me personally).

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            #50
            I, too started Tecfidera 1 1/2 months ago and my walking is definitely worse. I ended up going to the Emergency because I could no longer walk without holding on to something. My legs were trembling(this I didn't have before), too weak and the balance was really off. I felt better after the first Solu-Med infusion. I was at the hospital at the time and didn't have my meds with me. My husband got them three days later and I immediately started feeeling burning pain in my legs and the stiffness was much, much worse. I swear Tecfidera is either causing me to have a flare-up or is making my sympoms much worse. I see that some of the posts here are quite old and I appreciate any response from people who felt worse after taking Tecfidera. Did you stick with it? How long? Did it get better?

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              #51
              Week 8 and taking a break

              I did so great on Ty. It was a miracle. But I'm jcv+ with high titre. If I were single I would have stayed on Ty but I won't take the risk with my family.

              I wanted rituximab , but they suggested Gilenya first. Failed due to high blood pressure. Waited two months and did more monthly pulse steroids then started Tec.

              I feel like death. The fatigue and muscle weakness, cog fog and depression are killer. My MRi after 5 months w/o Ty showed first new lesion in three years.

              My MRI last week after 8 weeks on Tec shows that lesion has a new friend. Both enhancing. The MonSter is fully awake again.

              Ty kept it in check for 24 months. I know I can't go back, but I'm begging for rituximab. I cannot live like this. Neuro is treating as a flare because of the enhancing lesions, but I just did my solumedrol and taper and I still feel like death. Solumedrol ALWAYS made me feel better when I was flaring before Tec.

              I didn't take my pill tonight and I'm not going to take it tomorrow. If I stop for a week and I feel better then we know for damn sure that its the Tec.

              I have a friend loving rituximab the way I loved Ty.

              I'm taking control of my body again. I cannot and won't live like this.

              Also I'm calling biogen to report all of my supposedly rare side effects like fatigue, muscle weakness and depression. I think there are way more people out there suffering.

              They make such a fuss about GI issues and flushing and I had hardly any of that. Just fatigue and weakness like death.
              Melissa Goerke
              [I]DX 7/2/10, Copaxone then Avonex, started Ty 9/13/11, JCV+ ended Ty 9/13, started Gilenya 12/13 Blood Pressure skyrocketed, started Tecifdera 4/5/14 - fatigue beyond bearable and symptoms became worse. Rituximab 8/8/14.....waiting for the miracle. I WANT MY TYSABRI BACK!!!

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                #52
                Thanks everyone. I started Tec about 3 weeks ago. Sunday was completely different from today Friday. I am having trouble standing, walking, getting up. I just wrote my dr
                This made me feel better that it's not in my head.

                Is anyone thinking of trying something else or riding this out. I've been on Avonex, (3ish yr) Betaseron, (3 ish) nothing (3years), Tysabri, (4years) LDN (2)

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                  #53
                  Walking issues

                  I have been on Tecfidera since late 2013. Started having some trouble with walking and balance in June 2014. My neuro put me on steroids and things were better. But then the walking/balance issues came back and persisted. In October 2016 I fell and split my chin. Asked my neuro if I could be having a relapse and asked about steroid treatment. She didn't want to go that route and suggested that perhaps I am progressing. I have fallen several times over the last 6 months and use a cane or a walker all the time. After talking to family, I have come to the conclusion that the Tecfidera is the cause of this. Then I found these posts and there are apparently a LOT of people that have had the same problem! I stopped taking the Tecfidera yesterday and will see how much I improve over the next several days. I contacted my neuro after my last fall, which was in February 2017, and have NEVER heard back from him!

                  Most of the posts I found are all couple year old. Is there anyone on here that is currently having walking/balance issues and are taking Tecfidera?

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                    #54
                    Tried TEC-went back to copaxone

                    I went on Tecfidera june2013 when it came out. I previously was on copaxone with no problem. I wanted the oral administration of Tecfidera. I had no flushing or gastro problems. Within a few months I noticed I was leaning more and reaching for walls. Then I noticed some body aches, hair falling out and more headaches. It was annoying. After 14 months on Tec, I went back to copaxone.

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                      #55
                      Now?

                      Originally posted by Monti View Post
                      I went from taking Copaxone for 2.5 years to now recently using Tecfidera with minimal side effects - maybe slight flushing and that is it. I have to say I do feel better and balance and walking issues have improved enough for me to notice. I was already taking Ampyra and take 5000iu vitamin D and vitamin B12. I also exercise daily which includes foot drop exercises and leg toning. I hope to continue to feel good on this drug and hope that you do too. Positive thoughts prevail!
                      How are the meds doing now? I see this post was from 13'. I just started taking Tec a month ago. I also take Ampyra for my left leg. I yoga daily and take both of those vits.

                      I don't mean to intrude years later. You story and mine are very similar( from this post)

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