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Newbie to MSWorld - Tecfidera??

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    Newbie to MSWorld - Tecfidera??

    Hi, new to this site. Was "officially" diagnosed in 1997 - relapsing remitting. Since 1997, been on Betaseron, changed to Copaxone around 2009, and starting Tecfidera on Thursday. All things considered, I am well, have a good attitude and live a good life! I would love to connect with some folks who have recently started Tecfidera!

    #2
    Welcome to MSWorld jennt!! So glad you are her among us. We have some incredible people here with lots of knowledge and lots of experience and we all understand what it means to live with MS! It sounds like you have a great attitude!

    We have a forum about medications and treatments with lots of information about Tecfidera. I am going to move this thread over to that forum so it is more visible where others have joined in sharing their experiences.

    Good luck on this new drug and hope it works well for you!
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      I'm only about a month into tecfidera. So far I've had three main side effects: flushing (hotness, redness and itching), abdominal pain and nausea. I don't get these side effects every time that I take the meds, but I get them on a pretty regular basis.

      The flushing has gotten a lot better and only happens occasionally now (maybe once a week).

      The nausea and abdominal pain seem like they're getting once. I pretty much have it on a daily basis and last night they woke me up out of a dead sleep and kept me up for about 4 hours.

      At this point, I really wish I could go back on Gilenya (I didn't have any daily side effects with the drug), but that's not an option for me anymore because of the infections I was getting.

      I know this isn't the most positive post, but it's my honest experience thus far.

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        #4
        Good luck

        starting Tec tomorrow.

        I started 2 weeks ago tomorrow. So far so good. I've had some flushing a couple times. No GI issues -- yet. Keeping fingers crossed it stays that way

        Hope you have very minimal side effects (if any)!

        Bree

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          #5
          tec

          Started Tecfidera this morning. Hopefully I will have minimal side effects, am worried about that.
          I used to be in control of my body. Now the body is in control of me!
          DX RRMS 1997 SX 1995 or earlier
          Breast Cancer 2002 thought the chemo put me into remission. Boy was I wrong!
          DMD Avonex 5/11, Baclofen 60mg 10/2012, Tecfidera 6/19/13

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            #6
            Just heard back from my neurologists office and they have a pretty simple over the counter cocktail to counteract the flushing and abdominal symptoms:
            • Take each pill with a meal
            • Take 1 baby aspirin (81 mg) each day
            • Take 1 zantac pill before each tecfidera pill


            This plan lasts for the first 3 months while my body adjusts. If you run into issues, call your neuro. Apparently most of them have a pretty quick fix for the stomach and flushing issues.

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              #7
              small town girl,
              After about a month, you will have to report on the effectiveness of your 'cocktail'. It may be of help to the others who have the same problems taking Tec. Good luck

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                #8
                So far so good. Since starting the baby aspirin and zantac I've yet to have any abdominal discomfort, nausea or flushing. Major improvement.

                I'll report back in about a week and then at about a month.

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                  #9
                  Originally posted by jennt View Post
                  Hi, new to this site. Was "officially" diagnosed in 1997 - relapsing remitting. Since 1997, been on Betaseron, changed to Copaxone around 2009, and starting Tecfidera on Thursday. All things considered, I am well, have a good attitude and live a good life! I would love to connect with some folks who have recently started Tecfidera!
                  Hi jen , i just start tecfidera yesterday .. No problems yet

                  Comment


                    #10
                    Hello jennt and welcome to the site and I hope you do well on TEC.

                    Just a small town girl- Thank you for the infor. I will be starting TEC. July 16 because I am in a washout peroid.

                    My neuro already told me to take a baby aspirin now I will try the zantac.
                    God Bless Us All

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                      #11
                      Today is day 5 for me. I have had no issues! Maybe a very SLIGHT flushing within a few hours of taking (only a couple of times). I take one Prilosec each morning and take my Tec with breakfast and dinner on a full stomach. I know it's still early and I am still on the lower starter dose, but so far so good! Sure hope this continues. I am LOVING no injections after 16 years!!!

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                        #12
                        I am starting Tec next Monday. I am going to try the aspirin and Zantac combination from the get-go to see if that prevents the side effects. I'll report back!

                        Thanks for the info!

                        Comment


                          #13
                          New to website

                          Anyone have a thoracic syrinx and MS?

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