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Gilenya Users...positive/negative

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    Gilenya Users...positive/negative

    Hi there!

    I am in the process of choosing a new DMT. Rebif tore my body up with liver, pancreas, depression and much more. I was hospitalized for quite some time. I wanted to try Aubagio but my Doc says that one is not good for the liver! THEY ALL seem like that. I'm really nervous about this. It's between Gilenya and Tecifdera. I'm pushing more towards Gilenya. What are your thoughts? Not a whole lot of posts. I've been off a DMT since end of April and my one year diagnosis will be end of August. I so appreciate the feedback. Bring it on!!


    Diagnosed 6-28-14
    Alone we can do so little; together we can do so much. ~Helen Keller~

    IM not on G . But I wanted to post and tell you that this same thing happen to me with Avonex ( Rebif`s cousin). I switched toTy at the time and I had no problems (. The oral medications were not available yet). The liver Is a strong organ and it has the ability to regain and repair damages. Good luck to you!
    MS World
    PPMS DX 2001



      Hi Diamond,

      Gosh, sounds absolutely dreadful what happened to you because of Rebif . I'm sorry it wasn't caught before things got so bad. Did any of that get picked up in your bloodwork before things went so terribly wrong? I hope you are doing much better, now, and it's good to see you back!

      I had to quit Rebif, too, but not because it affected my liver. I was on it a couple of years, though, before my body suddenly started reacting so badly to it. Spent a miserable 3 straight months in the hospital because of dangerous fevers (106 F). Moronic neuro refused to take me off it, despite an emerging pattern I was too sick too notice. My fevers would break, then another high fever. Hmmm - always shortly after (within and hour and a half) my injection. Much to his chagrin, I finally made a connection (he told me there was no way the fevers were from Rebif) and refused my injection. No more fever. Neuro still adamantly insisted it was only a coincidence. More to prove a point I finally injected it several weeks later, another high fever. Arrogant neuro still insisted it was another coincidence. I think not. (Have reason to wonder what his motivation really was .)

      Several months later another neuro suggested rechallenging my system with it again, but by titrating super slow to only the half dose. Never even made it that high and had another high fever. Needless to say, I never took another dose.

      Was a gradual thing, but never realized how much Rebif was affecting my mood. The dark cloud slowly lifted once I went off it.

      Didn't do so great with Gilenya, either. Wound up with life threatening infections (long story, but was in sub-acute rehab at the time). UTI quickly went septic, which led to endocarditis. My MS didn't fare well either, had a bad relapse. No steroids because of the infections. Was a rough time, and never fully recovered from the relapse. My MS Specialist wasn't happy anyone kept me on the drug with my wbc counts. Didn't realize he was also concerned about PML, it hadn't even showed up yet with Gilenya.

      Both Gilenya and Tecfidera can affect wbc counts. Gilenya can also affect your liver. Just be sure your neuro is not only ordering routine bloodwork, but both receiving and reading the results. Would also suggest finding out at what point he/ she would get concerned. I found out the hard way some doctors take greater risks.

      I hope you do very well with whatever one you decide. Please keep us updated and good luck!

      “When you change the way you look at things, the things you look at change.” ― Max Planck


        Thanks Kimba for your kind words. Will write more when I make a decision. I'm still recovering but slowly getting better.

        Diagnosed 6-28-14
        Alone we can do so little; together we can do so much. ~Helen Keller~



          Hi, Neighbor sorry to hear about all your problems and how sick you have been. My neurologist would not let me go on Gilenya at all because of the liver issues, as usual our choices are never good but she also does not like Tec because of all the stomach issues with it. At one time we were discussing copaxone but it is not as effective as Gilenya or Tec. If you have liver damage you might want to go see a M.S. specialist. I sure hope your recovery goes well and and I will be praying for you.
          Your Friend, Tim

          Common side effects of Gilenya:

          Abnormal Liver Function TestsSevere.
          Trouble BreathingSevere.
          CoughLess Severe.
          DepressionLess Severe.
          DizzyLess Severe.

          More items...
          Common and Rare Side Effects for Gilenya oral - WebMD

          **Moderator's note - error in link**


            Originally posted by Diamond57 View Post
            It's between Gilenya and Tecifdera. I'm pushing more towards Gilenya. What are your thoughts?

            I have never been on Tec, so all I have to go on with that are the posts here concerning it, but it seems to me that Gilenya has less sever side effects. Tortis has listed some of the more common side effects which have been reported with Gilenya.

            I have been on G since it came out, and have not had any problems to speak of, BUT everyone reacts differently to every drug. My liver function is checked every three months (mostly because I am diabetic) and has been good so far.

            But DO keep up with your wbc counts! Mine are on the low side, but MS Neuro isn't concerned yet.

            Best of luck with your decision. And I hope that you continue getting better .


              I took Gilenya and seemed to be doing well for two months. Then I started to have breathing problems and had to go off.


                On G since June of 2012. Low WBC has been a concern. Have decreased the dose with neuro approval as I am a lightweight. No other side effects. Tec also has PML concerns and having read about the digestive issues, I would not take it. It´d be hard to work and run to the loo every day.

                There are things you can do to support and heal your liver. Please look into that.


                  Gilenya rare side affect

                  I am sorry to be so late in responding. I'm playing catchup for all that years of reading (lurking) but not participating in the forum.
                  I was diagnosed with Macular Edema which is a rare side affect of Gilenya. The black spot in my vision was irritating but I didn't experience any other problem. Because of that diagnosis I was a wash out for Gilenya. I am currently doing well on Tecfidera. I wish everyone luck in selecting a treatment that works for you.


                    Been on Gilenya since clinical trials and it was just called Fingolimod 5 or 6 years now I guess? Anyway still doing well on it but it seems to have lost some effectivness. The side effects have been very mild for me and liver issues have not been an issue. Granted I don't drink and never take tylenol other than when I take a norco so that may have helped me not have liver issues with it.

                    With your neuro's blessing I would definitely recommend it over the other DMD's I have tried.
                    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


                      I was On Gilenya for almost 4 years, 3 years without any new lesions, then they started again so it was time to change meds. I have now been off Gilenya since early November and I feel so much better. No more constant fatigue, crankiness, & anxiety. I guess I didn't really notice it at the time that these issues were always there as I was just glad it had halted new lesions.

                      Now on Zinbryta after a 4 week wash out period and a high dose course of Prednisone to stop a flare up. All in all I feel so much better but only time will tell if Zinbryta will work!

                      All the best everyone.