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    My First Dose Report

    Sharing this info for people wanting to hear others' experiences with their first dose of Tecfidera. Keep in mind I'm very sensitive to medications. (i.e. Copaxone tried to kill me by putting me into anaphylactic shock; Avonex gave me terrible flu-like symptoms for 36 hours each week even after 7 years of it; Rebif gave me a full WEEK of flu-like symptoms.)

    10:35am: Took 324mg aspirin (4 baby tabs) with a few crackers.
    11:25am: Took first 120mg dose of Tecfidera with a bowl of steel-cut oats.
    1:15pm: Face feels a bit warm, but I just finished my violin lesson that took a lot of effort.
    1:30pm: Definitely flushing. Face and ears burning. Looked in mirror and face, ears, upper chest are very VERY red.
    1:55pm: Feeling dizzy, but might be slight panic. Also, shoulders and upper back are red and burning.
    2:05pm: Arms red, too.
    2:25pm: Hot burning in face seems to be calming. Still feel it in my ears, back of my neck. Arms are itching a bit.
    2:45pm: Ate a piece of toast with butter per Krista's recommendation. Some of the flushing is receding.
    3:15pm: By the time shower was done, most of the flushing from my face, ears and arms was back to normal levels of red for me. Upper chest was still splotchy. Face and ears still *feel* warm, but the redness isn't really there. Also feeling very tired now.
    3:50pm: Stomach a little queasy but haven't eaten all that much today. Took one Tums tablet. Going to take a nap now. Most of the redness is back to baseline, but skin still feels warm and itchy.
    5:00pm: After nap, stomach was fine, and flushing was gone. Still feeling very tired though.

    Now I'm just waiting for my next dose.

    Oh, and about the PML risk: I am not reading too much into the "news" articles that have come out. They've known this information for a long time, even through clinical trials. Fumaderm is NOT the same drug as Tecfidera, and even though they're "cousin drugs", I'm still not worrying. I had a discussion with my neuro about it, who says he does not believe is the dimethyl fumerate that caused the PML, but the other medications the patients were taking (which were also immune modulators or more often, suppressants). For me to be comfortable enough to take Tecfidera is saying a lot, because not only am I JCV+, I had a friend who was on Tysabri develop PML and saw first hand how terrible it was. Just my thoughts. Talk to your doctors! Get all the information you can, not just "news" articles that leave information out, and make your decisions based on that! Good luck!

    #2
    Tidesong, thank you for the post. Do they recommend taking baby aspirin for some reason? Is it supposed to help minimize the symptoms? (Sometimes aspirin itself can upset a stomach.) Also, I wonder if you ate more during the day, if your flushing would have subsided faster or been less severe? I am NOT looking forward to the idea of lobster red heat... Maybe better to get used to it now than starting med in the heat of summer. I hope the unpleasantness passes quickly for you.
    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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      #3
      Originally posted by tidesong View Post
      Sharing this info for people wanting to hear others' experiences with their first dose of Tecfidera. Keep in mind I'm very sensitive to medications. (i.e. Copaxone tried to kill me by putting me into anaphylactic shock; Avonex gave me terrible flu-like symptoms for 36 hours each week even after 7 years of it; Rebif gave me a full WEEK of flu-like symptoms.)

      10:35am: Took 324mg aspirin (4 baby tabs) with a few crackers.
      11:25am: Took first 120mg dose of Tecfidera with a bowl of steel-cut oats.
      1:15pm: Face feels a bit warm, but I just finished my violin lesson that took a lot of effort.
      1:30pm: Definitely flushing. Face and ears burning. Looked in mirror and face, ears, upper chest are very VERY red.
      1:55pm: Feeling dizzy, but might be slight panic. Also, shoulders and upper back are red and burning.
      2:05pm: Arms red, too.
      2:25pm: Hot burning in face seems to be calming. Still feel it in my ears, back of my neck. Arms are itching a bit.
      2:45pm: Ate a piece of toast with butter per Krista's recommendation. Some of the flushing is receding.
      3:15pm: By the time shower was done, most of the flushing from my face, ears and arms was back to normal levels of red for me. Upper chest was still splotchy. Face and ears still *feel* warm, but the redness isn't really there. Also feeling very tired now.
      3:50pm: Stomach a little queasy but haven't eaten all that much today. Took one Tums tablet. Going to take a nap now. Most of the redness is back to baseline, but skin still feels warm and itchy.
      5:00pm: After nap, stomach was fine, and flushing was gone. Still feeling very tired though.

      Now I'm just waiting for my next dose.

      Oh, and about the PML risk: I am not reading too much into the "news" articles that have come out. They've known this information for a long time, even through clinical trials. Fumaderm is NOT the same drug as Tecfidera, and even though they're "cousin drugs", I'm still not worrying. I had a discussion with my neuro about it, who says he does not believe is the dimethyl fumerate that caused the PML, but the other medications the patients were taking (which were also immune modulators or more often, suppressants). For me to be comfortable enough to take Tecfidera is saying a lot, because not only am I JCV+, I had a friend who was on Tysabri develop PML and saw first hand how terrible it was. Just my thoughts. Talk to your doctors! Get all the information you can, not just "news" articles that leave information out, and make your decisions based on that! Good luck!
      That sounds pretty scary.How did you handle Tysabri.

      I'm on Ty and am interested in Tecfidera.I briefly discussed this with my Neuro.Next Neuro visit I may opot for Tecfidera.

      Keep us posted.I'm always checking this thread.
      Without hope there's nothing.

      Comment


        #4
        Originally posted by fairpace View Post
        Tidesong, thank you for the post. Do they recommend taking baby aspirin for some reason? Is it supposed to help minimize the symptoms? (Sometimes aspirin itself can upset a stomach.) Also, I wonder if you ate more during the day, if your flushing would have subsided faster or been less severe? I am NOT looking forward to the idea of lobster red heat... Maybe better to get used to it now than starting med in the heat of summer. I hope the unpleasantness passes quickly for you.
        No, I just bought baby aspirin because my neuro thought that would be enough, but I decided it would be best to take the 325 mg MS ActiveSource recommends. Also, they're coated tabs so they're less likely to cause stomach upset.

        I can't eat more during the day than I do normally, because I'm on a weight loss journey right now (105 pounds down from high weight!) and don't want to slide back.

        Comment


          #5
          Originally posted by ms man View Post
          That sounds pretty scary.How did you handle Tysabri.

          I'm on Ty and am interested in Tecfidera.I briefly discussed this with my Neuro.Next Neuro visit I may opot for Tecfidera.

          Keep us posted.I'm always checking this thread.
          I was never on Tysabri. I refused. My previous therapies were Copaxone (which tried to kill me by putting me in anaphylactic shock after an injection), Avonex, and Rebif, whose flu-like side effects I could not tolerate anymore after getting them severely every week for 7 years.

          Comment


            #6
            1ST DAY ON TECFIDERA

            YUP 120 MG AFTER BREAKFAST - YEAH GOT A LOT OF COLOR...I'M REALLY WHITE SO THE COLOR WAS NICE.

            120 MG AFTER DINNER FEELING GOOD.

            I'M ALSO TAKING TIZANIDINE AND AMPYRA.

            WALKED WITHOUT A CANE FOR MOST OF THE DAY TODAY. MAYBE SOME OF THE SIDE EFFECTS ARE MORE COMMON IN THE 240 MG.
            I left in love, in laughter, and in truth, and wherever truth, love and laughter abide, I am there in spirit.

            Bill Hicks

            Comment


              #7
              Originally posted by tidesong View Post
              I was never on Tysabri. I refused. My previous therapies were Copaxone (which tried to kill me by putting me in anaphylactic shock after an injection), Avonex, and Rebif, whose flu-like side effects I could not tolerate anymore after getting them severely every week for 7 years.
              I don't think Tysabri may be for you.Good luck with Tecfidera.
              Without hope there's nothing.

              Comment


                #8
                I truly wish you the best of luck. The severe GI side effects didn't hit me until day 3-4. I never saw the flushing.

                Comment


                  #9
                  Thank you for the detailed report! I'm about to eat come breakfast and take my first pill, and I am also one who is very sensitive to meds, so it's helpful to read what you posted.

                  Comment


                    #10
                    Originally posted by BrianH View Post
                    I truly wish you the best of luck. The severe GI side effects didn't hit me until day 3-4. I never saw the flushing.
                    Brian may I ask what type of Gi issues you had? I am already on the end of the first week of the regular 240mg dose. I'm happy I didn't experience the flushing either. I got hit with a nasty flu/cold because everyone in my house got it and at first I was scared my nausea was due to Tecfidera but realized it wasn't. I have noticed I'm very gassy...oops lol I can deal with that!

                    Comment


                      #11
                      I'm on day three, and knock wood only side effect for me so far is fatigue. Haven't had the flushing or GI issues, they may still come. I'm also severely allergic to a huge amount of meds, but finally decided after last MRI to go back on an MS drug after eight years-last attack was very bad, my spine is lit up like a x-mas tree After much research decided to hold out for bg-12, instead of abugio, so far, knock wood, it's going well. Good luck to all and for those having the side effects, I hope they lessen or just plain stop for you.

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