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WALKING AND TECFIDERA

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    #31
    I'm so glad I checked the site today

    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?
    I have noticed that since I started Tecfidera my legs are weaker. I had a really bad case of side effects last night. Vomiting, diarrhea, rash - everything. I was as weak as a kitten! My legs didn't work at all. My husband had to carry me to the bathroom. I'm better today but I thought I would check to see if anyone else was experiencing the weakness. I can't believe that this isn't noted as a side effect.

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      #32
      I was anxious to try it

      Originally posted by mgb4ms View Post
      Haven't posted on this site before now but reviewing posts on Tecfidera and a bit anxious about starting it. Trying my best to have things in place to counter act side effects if/when they happen... Finally got a response from my Neuro's office that there was no need for a wash-out period, so I guess sooner than later, right?!

      I try to work out 2-3 times/week but have been experiencing problems with leg weakness & imbalance. Fell twice in the past week, so I am really discouraged to hear that this drug may make things worse (B4 they get better). I have taken Copaxone since Oct 2004, was unofficially diagnosed in '87; confirmed in 2003. My husband and I feel I am starting to progress with accumulating disabilities. Do not walk long distances, use a cane if needed...which is now more often than not.

      Rattling on - sorry - but doing mental battle about changing to Tec, even though I so want to stop injecting! How did the others feel about making the change?
      I was on Tysabri and felt great but I had to come off it when the JC virus was found in my blood. I had great hopes for Tecfidera but now I'm not sure. I could be over reacting. I'm waiting to hear from my doctor. I injected for years before Tysabri so I know what you mean. Give Tec a try it might be good for you.

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        #33
        Very frustrated



        So, long story how I get diagnosed but I recently (still on starter dose) started taking TEC.

        I have never had a balance or walking problem. Worse thing was a little vertigo not very often.

        So now.. It's like my head is clouded. I am not stable. I have had no other side effects but I am bumping into things and very dizzy. Not weak.. I play softball and can sprint around the bases but just walking around work is driving me nuts! This started the day I started taking TEC and frankly am thinking of just stopping.

        By reading this thread I can see this is something that other people are dealing with also.. thoughts?

        Thanks

        S

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          #34
          Walking problems

          I started Tecfidera this is my third week. The second week I noticed more problems walking and more numbness in hands and legs, plus tingling in my head. Then on week three I barely could walk and was very sick. I feel this drug has caused a major exacerbation for me. Neuro office says its because I have been so sick from the drug, nausea,diarrhea etc and it is not from the drug. I believe Tecfidera has caused my MS symptoms to increase dramatically. I am trying to see if these effects are going to go away, but it is hard when you keep getting worse. It feels like you are giving yourself poison. Thanks to everyone who posted their problems with this drug also. Information helps that you are not alone.

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            #35
            First dose down...

            Started low dose this a.m. - about 2 hours after taking it (81mg aspirin, breakfast beforehand), started itching/tingling and severe flushing. Looked in mirror - Ooops - forgot to put on my sunscreen!! Red as a lobster. That lasted an hour or so. Fine right now. A bit more unsteady on my feet. Drug related? Not clear.
            So far not as bad as I'd expected...yet. What lies ahead remains to be seen. Will keep you posted...Who else could relate to this stuff?

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              #36
              So long Tecfidera, it was nice knowing ya!

              As posted before, gait had gone downhill in month two and 3. Time was up for my annual MRI, reviewed results with my neuro, analyzed my gait. I had no new lesions and no growth in the one i had.

              Neuro feels that Avonex and that class of drugs i was on before have anti inflammatory properties and that affect my lesion and walking. (i do much better on small dose inflammatory) inflammatory has no anti inflammatory properties hence saw my walking go downhill.

              Switching back to inflammatory after 4 months on Tec...good luck you all, going back to the avonex board!
              Diagnosed 9/2010, copaxone 10/10, avonex 10/12

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                #37
                About 3 months into tec and I am having leg weakness like I have never had. It may be the heat of summer and progression, but it is just as bad on cooler days.

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                  #38
                  Same here

                  I am experiencing intermittent problems with my walking, balance, general 'direction' of gain while ambulating. Feel unsteady on my feet. Legs are weak after just a few minutes of doing anything...i.e. making the bed?! Ridiculous. But spoke with MS clinician and she said they've not been hearing this from other patients. Weird. I know it's not in my head - hub has noticed it, too.

                  Am supposed to start taking Ampyra - which I expect to receive in next few days. Told not to start for at least a week after beginning to take BG12. I sure hope these two together don't cause more problems Anyone out there taking both (I'm sure there are) and if so, how is it going?

                  Thanks for the input!

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                    #39
                    Wow

                    Wow...When I first asked this question, I was unaware how many would respond with similar symptoms. It seems every other day someone is posting how since starting Tecfidera, their walking abilities have decreased. My doctors always feel it's "in my head" as well when I bring something like this up, but I will be printing this thread out and show how many people are experiencing the same thing. As an update, my walking is still terrible and it's now getting to the point where it's hard to walk after a few minutes. I will be having a very serious conversation with my neuro at next week's appt. Please keep responding with your experiences.

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                      #40
                      Walking seems to have gotten worse on Tec

                      Hi I have been on Tec almost 3 weeks now, and I am only on the 120 2X a day because I have gotten strange reactions to meds in the past. I have had a real hard time with Tec between the stomach issues & extreme tiredness and my right hand & foot have been numb for years but now it seems to be worse since im on Tec & my walking & balance have gotten worse. I am giving Tec 1 more week if I do not feel an improvement I will get off! I am going to my Neuro tomorow I am going to ask him if I stay on Tec can I stay on 120 2X a day dose, otherwise I do not think I can tolerate this anymore, needless to say I am disappointed, I dont want to go back to giving myself shots again

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                        #41
                        My walking and balance have definitely gotten worse since beginning Tec one month ago. My family has been commenting on it too. I began with two weeks at 120 mg and then began 240 mg at week three.

                        I blamed the heat but it has gotten cooler this past week with temps in the low 70's and still having problems.

                        Maybe it is from all the GI upset and the flushing symptoms. It is just one more assault on the body and it will just take some time to acclimate. I am thinking that being warmer all the time maybe causing the walking and balance difficulties. Is this a prequel to menopause? I hope not.

                        I have had MS 23 years. I have been on Avonex, Betaseron, Copaxone, Tysabri and Novantrone. I walk with a cane and use a wheelchair for distance like the mall.

                        I cannot tell you how much I appreciate everyone sharing their experiences.

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                          #42
                          I've only been on Tec for 2 months but my walking is fine. Granted, I didn't have any issues before other than occassional drop foot, but I've noticed no changes in my MS. My left arm/hand, which has been strange since my diagnosis in 2004, isn't less useable and the constant tingling hasn't changed. I'm just as tired as I always am, so that's the same.

                          I'm sorry for everyone that is having an increase in symptoms since starting Tec. I think a lot of us had high hopes for this drug. It's too soon to know if the drug is working or not for many of us, but I hope and pray that as our bodies adjust we will all see an improvement.

                          If you are switching to Tec from another DMD, you may respond well like I have. Remember, everyone is different.
                          Lori
                          Betaseron 2004-2009, Tysabri 2010-2011, Copaxone 2012-2013, Tecfidera 2013...

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                            #43
                            Well I have been on Tec 3weeks now, & saw my Dr. yesterday we decided I should to stay on the 120 dose 2X a day for a while longer. I hope to see an improvement in my walking & balance soon, I will give Tec more time before I give up on it, I will keep you all posted. GOD BLESS, I keep praying good will come out of this for all

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                              #44
                              Update

                              After my episode I stopped taking Tec for two days. I then took only one pill a day for one full week. Things were good. The only side effect was the rash and if I take a Benedryl it went away quickly. I went back to two pills a day two days ago. So far no side effects. A little itchy feeling in my mouth, but it went away before becoming anything else. Still weak but I'm going to stay on Tec and see how it goes. I really miss Tysabri

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                                #45
                                Tec Week 2 almost over

                                I wrote about walking/balance being affected by this med, and it has gotten a bit better now that week 2 is coming to an end. Was really grateful that the higher dose has not caused any additional symptoms. Just greater fatigue, some instability walking legs weak... Not looking for a miracle, or a huge improvement, just trying to remain compliant in the hopes it has some benefit over and above Copaxone (no needle sticks!!).

                                Just received my delivery of Ampyra today - starting it on Monday. Keeping my fingers crossed that the two meds like each other and I can relax about doing errands, etc. soon!

                                Fight the good fight - I'm right next to ya!

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