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    Gilenya Satisfaction?

    Hi everyone

    Im newly diagnosed and have not been on any MS medication yet. My Neuro wants to start me on Gilenya next week. He says its our best choice but im leary after all the negative info i've read.

    Would those of you who have taken Gilenya give me a number from 1-10 as to your satisfaction with the drug. (1 being very unhappy and 10 being soooo glad you tried it.)

    No Navartis/Gilenya guides or reps please!
    Dx 3/4/12. Tec X 2 as of 7/7/13
    Weebles wobble and occasionally they DO fall down!

    #2
    I took it for about 14 months and I was pretty satisified ms wise.
    Side effect wise not ... I would advice waiting on BG-12. If I would tell my own child to go with interferon for now.. if you really want to know... wait and see what these other drugs have to offer.. or do in the way of problems. I just don't think G is where it is at.
    I think Ty is going to be the best one out there. I have never taken it... I was afraid of it and then lacked opportunity...
    But, it would not be my first drug or my first drug if I was mild RR..

    Comment


      #3
      Not on Gilenya but...

      When I was first diagnosed 11 years ago my choices were only Avonex, Betaseron and Copaxone. I chose to go on Copaxone based on the least side effects, even though it required daily shots. It worked well for me up until now...my last MRI showed a progression and many more lesions. Now I also have to make a choice for a new DMD.

      I haven't really decided yet, but I am less likely to choose Gilenya over Tysabri. Gilenya doesn't have a lot of history and the known side effects are of more concern to me than the chance of getting PML...I will be getting my JCV test next week to find out if I am + or -.

      My thoughts are that I will go on Tysabri for 1 - 2 years and then switch to BG12 if it lives up to all expectations.

      Good luck with your decision.
      Angela Dx RRMS 7/2001; Copaxone 9/2001

      Comment


        #4
        Gilenya

        I also started on copaxone. I hated the painful welts and dents in my arms from lipoatrophy. After 18 months, I went off to enter the fingolimod trial. I was in the trial for 2 years and almost forgot I even had MS because I felt so good!

        After the trial, I was on nothing for one year and all of my MS symptoms returned. Now on Gilenya for 6 months and everything is going well. I have had mild liver (ALT) elevation, but nothing serious.

        I do not understand what keeps people from trying this drug. I could never have tolerated the side effects of an interferon. I am very happy with Gilenya. I am not a drug rep but I am an RN and did lots of research on the meds that were available to me.
        Jeanette
        DX RRMS 11/06
        Copaxone 1/07-5/08 FTY720 Trial 2008 Gilenya 11/11

        Comment


          #5
          Rating

          My rating would be a 9!
          Jeanette
          DX RRMS 11/06
          Copaxone 1/07-5/08 FTY720 Trial 2008 Gilenya 11/11

          Comment


            #6
            Let me say, for some I think G is going to be a wonder drug. I would not hesitate to try again.. but I would need to be under another neuro who knew more about it.
            Since stopping it I am breathing better. I think my neuro ignored signs I was having problems.. I think there are also a lot of fear tactics being used on this drug right now.
            That is not fair and dr's are reacting to that... MAYBE.. not sure..

            Comment


              #7
              MS symptom wise - I would rate it an 7

              Side effects for me - a 4

              I stopped because my side effects were pretty bad and I couldn't take it any more.

              Even though there were new lesions on my last MRI. It may have done a lot to keep the symptoms at bay. I have been off of it for two weeks, and I my MS has definitely flared up. I can't start anything until June... so I hope things stabilize soon.

              I don't regret trying it.

              Comment


                #8
                8

                I've been on G for 17 months. Routinely I've had zero side effects and I actually mad wit through my second bar exam without a flare while I was on this (which was pretty impressive).

                My MS has always been very mild and I want to keep it that way, so my neuro and I decided to start G and hopefully kick some MS butt.

                However, just be aware that there are certain risks. If oh can accept those, it's ok. I'm currently in the hospital for an impetigo infection that would probably have been gone by now if I were not on Gilenya. I need to talk to my neuro, but even after this I'll probably stick with G.

                At the end of the day, take in all the info and go with your gut. As long as you do what you feel comfortable with, you're making the right decision. Hope all goes well no matter what you choose.

                Comment


                  #9
                  I will Rated 6 since I already have one flare.
                  I fixes somethings and brake others. I have a mild fatty liver (I don't drink anymore and was fine before G) and also I have some trouble breathing.

                  For me G meant no more Gym on account of being weak from the fatty liver and sottping yoga since I can't breath.

                  At first I wondered why, now after tons of reading and 7 months I finally now why.

                  Still I will continue with it since apparently there is nothing better because Ty is too risky.

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