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Be patient with Gilenya...

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    #16
    Originally posted by SFPat View Post
    Thanks Rainbow mom for the info. I am brand new to Gilenya, just started it 3 days ago. So far so good, can't tell any difference being on G. I am interested in supprt groups who can answer questions that I have. For instance, is it better to stay off alcohol for 6 weeks, until elevated liver levels even out?

    I love the idea of a Facebook group, but wondering if it is truly private. Since I have only told some of my friends and noen or my co-workers, I'm wondering if it shows up a "Pat just joined GILENYA group" or something else equally as telling?
    Pat - I never abstained from alcohol in the first 6 weeks and never had elevated liver enzymes. If I did, no one told me and I didn't get sick.

    As for the Facebook page, it isn't private but you can delete the information from your "feed" or on your home page. Anything you post on the site will remain. If nothing else, go to the page and read everyone's personal experiences with Gilenya. Most all of them are positive, which is very encouraging!

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      #17
      Originally posted by jinpa View Post
      I have been on G for about 6 weeks and can't stand it. Does the headache and fatique ever go away? I really don't know if I can stay on this drug.
      jinpa - My fatigue was so bad from MS, I didn't really notice a big difference in that area after starting Gilenya. I can tell you that my fatigue in general has really improved overall. I also didn't get the headache. I do know that many others in the trial had their side effects ease up after a few weeks. Be patient, but listen to your body. Everyone is different.

      Good luck to you and let us know if the side effects improve.

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        #18
        I have been on Gilenya since Dec 14th. When I started I did not get the headache, now, during the past month the headaches have started. RRR!
        I have to say though, when I was on Avonex and Betaseron I had really bad headaches. So maybe it is just me and how I react to the meds?

        CrazyCatLady
        MS Does Not Define Me.....My Love of Tea Does! LOL!

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          #19
          Thanks for the replys. It has been six weeks and I still have the headache. I think it might be time to talk to my doc. I was so hoping that this durg would be the one for me since I couldn't tolerate any of the others!

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            #20
            Originally posted by jinpa View Post
            Thanks for the replys. It has been six weeks and I still have the headache. I think it might be time to talk to my doc. I was so hoping that this durg would be the one for me since I couldn't tolerate any of the others!
            jinpa - I'm so sorry about your headaches. Hopefully you will get some relief soon. Let us know what your doctor says.

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              #21
              Update?

              Originally posted by jmm9503 View Post
              Thanks for the words of encouragement. I stopped Gilenya after 18 days because of the side effects. I restarted after my MD suggested that I give it another try. I am now on day 21, and for me it has not been an easy start. I'm in a lot more pain and the fatigue is difficult to deal with. Thanks for the pep talk-I am going to keep taking it!
              I am 4 years late but hopefully you are still on this forum. I started gilenya on Monday and am having several side effects. Are you still on gilenya? How are the side effects?

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                #22
                Update

                Originally posted by KevsLuv View Post
                I am 4 years late but hopefully you are still on this forum. I started gilenya on Monday and am having several side effects. Are you still on gilenya? How are the side effects?
                I'm still on Gilenya and doing well. The Gilenya Facebook page is very active, so I follow it and I am there more than here for current information. It's also a private group now, so no one can see your posts but other members of the group.

                Still no side effects for me except low lymphocyte counts, which is normal while on Gilenya therapy. I hope it continues to work for me!

                What kind of side effects are you having? Have they eased up at all?

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