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SWITCH FROM TEC TO G IS IT A LATERAL MOVE?

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    SWITCH FROM TEC TO G IS IT A LATERAL MOVE?

    I have been on Avonex, Copaxone and now Tecfidera. At present I am in a major flare. My Neuro has suggested switching from Tecfidera to Gilenya since my last MRI, 6 months ago, showed numerous new lesions and growth in other lesions. Right now we are battling the insurance company for approval.

    I was wondering what some thoughts are on the switch. Would it be a lateral move? Is Gilenya that much better than Tecfidera? Is there really that much to gain?

    I see my Neuro in the morning and would like to be able to discuss this with him. I'm not sure what my options would be if I didn't switch to G.
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    From what I understand, their efficacy is about the same (supposed to decrease relapses around 50%), but of course, every person is going to be different. What works for one person doesn't always work for another, as I'm guessing you've found out already since you've been on multiple meds.

    I'm about to start on Gilenya and when I was having that discussion with my neuro, he said that he prefers Gilenya over Tec. He says his patients typically tolerate it much better and he's also had a lot of patients on Tec call in with relapses, where that's not the case with Gilenya. With Tec being so new, it makes sense that issues are going to start popping up that weren't known before and Gilenya has been on the market longer, so I wouldn't think as many new issues would be discovered with it as Tec. Of course, they're both still pretty new, so that may mean nothing too.

    I hope you can get an approval soon. It's so frustrating when you have to fight the insurance company, and as many failures as you've already had, I don't understand why they're even giving you flack about it.
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

    Comment


      #3
      Wish I had some words of wisdom here for you, but wondered the same thing myself. And I too am going to see neuro tomorrow .

      I am currently on Gilenya, but latest MRIs showed new lesions, so I want to try something different. I have a feeling he is going to suggest trying Tec.

      I did the avonex thing for a few years (and did well on it) but I have a true needle phobia. Simply cannot put a needle in me! I got so mad and frustrated because it didn't hurt, but I just couldn't do it.

      I don't like when the needle is in anyone else's hand either, but can kinda tolerate it

      My ?wish list? for doctor tomorrow is
      1. Tysabri ... I believe that you are +JCV? So that isnt an option there for you.
      2. Lemtrada which I am willing to bet he will not agree to because it is "so new"
      3. Plegridy which I understand to be upgraded avonex? (definition of insanity - doing the same thing expecting different results?)

      Talk to your doctor tomorrow and express your concerns. They are getting paid big bucks to know about and to explain the drugs that they are prescribing to us.

      Wishing you a good visit tomorrow.

      Comment


        #4
        I am on Tecfidera switching to Gilenya I have completed all the testing and am now awaiting approval.
        Good luck to all of us
        Laurie

        Comment


          #5
          I"m currently on avonex but ti's not working so we are switching. I"m waiting to get on Gilenya, hopefully this week.

          I'm not sure I would call tec to G a lateral move. I think the way tecfidera works wasn't working for you but Gilenya works differently so it may be a better option.

          msgijo- I tried to get on plegridy but my insurance wouldn't cover it. But I did a bit of research about while I was waiting to get denied and the "pen" makes it do you don't even see the needle at all not like Avonex where you had to put the needle on the pen. It's only every 14 days and it's a sub q shot so it's a smaller needle which I'm sure you know. It might be worth looking in to if the only thing holding you back is the needle.

          Good Luck to everyone on finding something that works. :-/
          Sos219
          4/24/2014
          Avonex

          Gilenya 1/29/2015- present

          Comment


            #6
            Nah needles don't scare me not one bit. I looked into Plegridy but I have already been on Avonex which is basically the same. I am no longer considering it.
            Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

            It's hard to beat a person that never gives up.
            Babe Ruth

            Comment


              #7
              Since they donīt know how these drugs work, that is a piece of the puzzle. They have hunches and suppositions. The G would give me hope b/c one of the newest drugs in the works is similar to G but with a better safety profile.

              I donīt have any digestive side effects from G, but I read about gastric disasters with Tec.

              Comment


                #8
                I was fortunate with Tec that the only side effect I had was itching. G concerns me. For some reason I am very apprehensive in taking it. Well I guess the old say, Nothing ventured, nothing gained.
                Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                It's hard to beat a person that never gives up.
                Babe Ruth

                Comment


                  #9
                  How did the visit go ..

                  ..with your neuro today waydownsouth?
                  I hope your Dr. was able to give you the information that you need to make a decision on whether or not to even take any meds, and if so then what would be best for you.

                  Mine was a decent (for a change). He seemed to get that I really wanted something different today, and without prodding he suggested that I try Baclofen for my stiffness.

                  He really didnt want to talk about taking me off G, but as we started discussing the other meds I was interested in I believe that he realized he was over his head (he is not a MS Specialist but rather a neuro that treats people with MS). He suggested that I might like a referral to the MS clinic at a medical collage about 30 miles away in order to discuss what meds I should be on.

                  He did bring up that being SPMS complicated things ..

                  He also suggested that an antidepressant might be helpful, and that either he or my PCP could give me a referral to a psychiatrist? Since I know that I am depressed and have already gotten Celexa from my PCP I took a pass on that one.

                  But I am satisfied that tings are moving in the right direction for now.
                  My husband made a strange comment after the visit. He said he understood. He feels that I just want some hope . Maybe he is correct. I don't want to be one of us that is far enough along that a cure tomorrow would be too late

                  Comment


                    #10
                    msgijo,
                    My visit went well thank you for asking. Since I'm in a major flare and can't take IVSM we agreed that taking Medrol dose pack would be something that may help. We also agreed to keep trying to get my insurance company to approve Gilenya. If they do then we are going to see how that works. If they don't or if Gilenya doesn't work then I think I will be off of DMD's.

                    So now we wait. Keeping fingers crossed something works.
                    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

                    It's hard to beat a person that never gives up.
                    Babe Ruth

                    Comment


                      #11
                      I've been on both....

                      I've been on both drugs. My short story goes like this:

                      G was first drug I took after Dx. Absolutely NO side effects. No problem w my insurance approval or the drug co either.
                      Showed up at a Neuro appt one day w horrible scratches on my neck. Doc said I must b allergic. I told him the scratches were from MS-related itching. He insisted MS did not cause itching!

                      Switched me to TEC. No problems here w insurance or drug company either. However, terrible gastric/Diahhrea side effects. The dosage (I think) was 1 pill a day for 1 week, then 2 pills a day. I thought that was rediculous so I titrated the dosage myself (no I did not tell my dr). I took 60 days to work up to the full dosage. No side effects at all after that but I felt better on G.

                      After seeing a dermatologist who swore to Neuro that G wasn't causing an allergic rash, we agreed that I would switch back to it. Unfortunately, I've had a bad year and new MS specialist doesn't like new symptoms or their severity. He is switching me to Ty. Hope it works for me.

                      Hope G works for you! Good Luck
                      Dx 3/4/12. Tec X 2 as of 7/7/13
                      Weebles wobble and occasionally they DO fall down!

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