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    I just agreed

    to start Tecfidera. :'(

    I have been pretty resistant to medication until recently. I finally am seeing a MS Specialist, and it really did make a world of difference.

    I have found all of your posts very helpful. I'm not looking forward to the GI issues. I react very strongly to medication, so I am anticipating similar outcomes.

    My biggest concern is the cost. I am very thankful to have insurance, but even with it we have a very high deductible to meet before I'll be able to just pay out the tier cost for brand name drugs. (I have UHC with Caremark - anybody else?) I know the $10 program exists, but my understanding is that it only cover about 3 months of medication (capped at 15K annually?). Right now everybody says things like, "There's no better way to spend your money....nothing is more important..." It just makes me sad.

    Anyway, I'm going to head down to the lab tomorrow to do my CBC draw, and then see how long it takes to get the meds here.

    #2
    This is month 6 for me and still being charged $10. If you are sensitive to medications you could request your neurologist leave you on the 120mg dose a bit longer than others. This can give your body a better chance at tolerating it.

    Don't convince yourself you'll have horrible side effects. Many people have no side effects at all and the vast majority have tolerable side effects, especially after you learn what works best for you.

    Please keep us updated with your information ...

    Comment


      #3
      I know it's a big decision and can come with a lot of mixed feelings. Hopefully your side effects will be more minor. So far I've done a lot better than I anticipated, since I tend to have a pretty sensitive stomach too. Definitely pre-medicate with an antacid, take your pill with a full meal, take probiotics, and I also agree with increasing more gradually.
      2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

      Comment


        #4
        Just agreed today to start myself....

        I just agreed today after giving up on Betaseron 6 years ago. I only gave it 5 years before calling it quits. Decided the flu symptoms it gave me was no way to live. Now my nuro wants me to give Tec a try, assuring me if it isn't for me we can move on. I am so glad I found this forum as it is exactly what I need to get me through the start up period. Thank you all for sharing.

        Comment


          #5
          My wife and I attended a Tecfidera informational dinner last night and I was surprised that there was no consideration given regarding the possible side effects, even though there was a neurologist giving the presentation. The pharma reps were reluctant to say anything about side effects blaming their reluctance to speak on FDA regulations. I wasn't too impressed with the presentation about the drug, but the biggest takeaway for me is that if you can go on the drug for 60 days, your body will become adjusted to the side effects. I wish you the best of luck with Tech.

          Comment


            #6
            Well I gave the "b" 5 years, 60 days doesn't sound that bad at all. I do wish my 60 days didn't include the holidays. I also keep seeing everyone saying big meals before the pill. This is going to be the hard part for me. I don't eat big meals now and definitely don't eat fatty foods.

            Comment


              #7
              not needing a big meal....

              Hi AlaskaAnn, and everyone...
              Just to let you know- after reading notes here, I started having more food and it's better. It's not always a big meal, but more than just a few bites. I do try to have protein, carbs and fats when I can. In the last 3 days I am having more than a few bites, 2 baby aspirin and half a benadryl with each (240 mg) capsule and the flushing has subsided quite a bit. It's much better and tolerable now. Thanks folks!

              Comment


                #8
                Eliden I am so glad to hear you are doing better !

                Comment


                  #9
                  Thanks!

                  Originally posted by AlaskaAnn View Post
                  Eliden I am so glad to hear you are doing better !
                  Hi AlaskaAnn, thanks! I am doing better now! Have you started yet? Wishing you all the best, and smooth sailing

                  Comment


                    #10
                    So glad you are doing better!

                    Hugs

                    Comment


                      #11
                      I'm still waiting on the order for CBC count - I need to email my doc again - she said she sent it a week ago. With each day passing from my visit, I grow less and less committed to taking it and more and more worried! :O

                      I understand what you mean about not wanting to do this during the holidays. I tend to eat too much, so if I do have this side effect, at least it will be somewhat useful.

                      I'm not looking forward to the GI/flushing issues (if they happen) but I'm more concerned about the white count decline. I'm shocked that they didn't disclose that information during your meetings. That's a huge risk IMO. I wish these companies would just be honest. I am so much more willing to accept information when it's full and balanced. Our healthcare system has a long way to go.

                      Comment


                        #12
                        Originally posted by eliden3 View Post
                        Hi AlaskaAnn, thanks! I am doing better now! Have you started yet? Wishing you all the best, and smooth sailing
                        No. I just agreed last Thursday . With being in Alaska and how everything goes so slow up here I don't expect to start for a couple weeks. My Nuro said to the insurance company usually takes a week at the worse two so .

                        I

                        Comment


                          #13
                          thanks!

                          Originally posted by abck05 View Post
                          So glad you are doing better!

                          Hugs
                          to abck05: thanks! hope all is well with you...

                          Comment


                            #14
                            I see....

                            Originally posted by AlaskaAnn View Post
                            No. I just agreed last Thursday . With being in Alaska and how everything goes so slow up here I don't expect to start for a couple weeks. My Nuro said to the insurance company usually takes a week at the worse two so .

                            I
                            Hi AlaskAnn, I see..... well hopefully it will be faster than that, but a week ir two isn't bad.... It's good to have these posts and input from other folks. All the best to you!

                            Comment


                              #15
                              Any news yet?

                              I just agreed to try it too....this will be my first medication, and I anticipate insurance issues since my doc has said 2 of his 12 patients wanting to try it have had approval right off the bat.

                              Curious.

                              Comment

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