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If you switched from Tec to Gilenya ...

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    If you switched from Tec to Gilenya ...

    How did your side effects compare? I talked to my MS specialist today about possibly switching from Tec and Gil seems like the most promising option. I've been on Tec 1.5 years and my MRI's have been stable but I'm still having GI issues, fatigue that may or may not be related, and I still have the flushing if I don't take the baby aspirin.

    My MS specialist said Gil is very well-tolerated in her patients and none of them complain of GI issues. And that it turns out it might even be more effective than Tec, which seems like it may have been overhyped at first? Seems too good to be true. How have your experiences been?
    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.

    #2
    No one? Really?
    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.

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      #3
      Gilenya was the first oral med on the market so that is what I started with. And have stuck with. Sorry, never took Tec ...

      Gilenya has been well tolerated, but I would suggest that you insist on frequent blood work to keep an eye on your WBC.

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        #4
        Originally posted by msgijo View Post
        Gilenya was the first oral med on the market so that is what I started with. And have stuck with. Sorry, never took Tec ...

        Gilenya has been well tolerated, but I would suggest that you insist on frequent blood work to keep an eye on your WBC.
        OK, thank you so much for taking the time to respond! I really appreciate it.
        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.

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          #5
          I've also never taken Tec, I was on Rebif before Gilenya. Sorry I can't be of more help!
          Diagnosed with RRMS on 3/15/2013...beware the ides of March!
          Rebif from 5/2013 - 09/2014.
          Gilenya since 11/2014.
          Also taking vitamin D3, fish oil, magnesium, and B12.
          EDSS 3.

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            #6
            I was on many MS drugs. This is my second go with Gilenya. Aubagio gave me migraines and after 18 months. tec killed my stomach. After another 3 months it was decided I would go back on G that I had abandoned with another Dr only because I couldn't take my heart med. This dr allowed me to go back on it after 3 months. Tysabri was my favorite but next to that Gilenya is the best for me. Good luck
            Laurie

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              #7
              Also never on Tec was on Avonex and Betaseron before G. G beats the heck out of both of those. I was part of clinical trials so been on G for a long time and I have tolerated it very well the whole time.
              Rise up this mornin, Smiled with the risin sun, Three little birds Pitch by my doorstep Singin sweet songs Of melodies pure and true, Sayin, (this is my message to you-ou-ou

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                #8
                Thanks so much for the responses!
                Apparently my MS specialist wants me to come in yet again to discuss it before switching and wanted to make sure I knew about the new PML case. :/ So we'll see ...
                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


                  #9
                  Wanted to bump this to the top to revive the thread

                  Hey all! I am currently off Tec after almost 3 years. Damn near destroyed my platelets. Now almost certain going on Gilenya. Anyone since this thread died a few years ago have any experience with changing from Tec to G?

                  Comment


                    #10
                    Originally posted by Devilinside View Post
                    Hey all! I am currently off Tec after almost 3 years. Damn near destroyed my platelets. Now almost certain going on Gilenya. Anyone since this thread died a few years ago have any experience with changing from Tec to G?
                    Hello Devilinside, I am currently thinking about switching from Tec to G. My doc wanted me on Ocrevus but I did not like what I was hearing about that. I'm doing ok on Tec but due to a flare last year my doc would like to switch.

                    Did you make the switch? If so how are you doing?

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                      #11
                      Howdy dcancellarich! Yep, I took the plunge! I took my first dose of G on Sunday, so today was my 3rd pill. So far no side effects that I notice, other than a little sleepy. Don't know if that is due to the slowed heart rate or the mind blowing burn out I have at my job. Either way, I can do everything just fine and am not weak or anything.

                      So far no headaches or GI issues...so that being said, so far so good I suppose.

                      I do not miss Tec. I was on it for 3 years and flushed every single day I took it and had off and on stomach pains. Hated that I had to eat something with it too.

                      Hope this helps and keep us posted if you do switch!

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                        #12
                        Sounds like you are doing well! Glad to hear it. I see my doctor in September. I only had GI issues for the first few weeks of Tec so I have handled it pretty well. My doctor just isn't a big fan of Tec and feels that Gilenya is more effective. I will keep you posted. Keep me posted on how you are doing please. Thank you!

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                          #13
                          Well 1 month in and so far so good. I just try to keep myself from thinking about the scary possible side effects. Won't have an MRI until next summer so time will tell.

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                            #14
                            Thanks for posting this update! I saw my neuro yesterday and just have to get blood work and Ekg done then will be scheduled for my first dose. So glad to see you are feeling well! I hope I do as well as you.

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