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    I want to hear good news about gilenya

    the doctor wants to put me on it and we started the paperwork. I read good things on it but here. All I hear from you guys is bad news. Did I make a mistake is there anything good out there on this?

    #2
    I'm also getting ready to go on Gilenya. I think many do well on this drug and so have no reason to comment. We are all so different, so many different experiences.

    When I was on Tecfidera, I saw many comments regarding side effects, stomach issues, flushing etc. while I did just fine. I quit going to that forum much until my lymph counts became an issue, just didn't have any reason.

    Personally, I'm diving into this head first without analyzing the comments too much. With one exception, I'll admit to googling Gilenya PML 2015, because this seems to have slipped under the radar. I just haven't found much on this incident. If it weren't for Marco's post, I wouldn't have even known it occurred (thank you Marco). My biggest concern in this regard are my low lymph counts. I'm hoping they return to normal and stay that way! Now I'm curious about Gilenya and a condition called PRES (can't remember the acronym), another one not widely published, I think it's very rare.

    All the drugs have side effects, you have to weigh the risks and benefits. At least there are a few more options than there used to be! Good luck and positive thoughts!
    Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.

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      #3
      So far so good

      I started Gilenya about a month ago. It has gone really well. To tell you the truth I was really worried about starting because of all the negative descriptions I've read. I haven't really noticed that many side effects. I do have to eat more in the morning so my stomach doesn't get upset. I was worried about the heart related issues because I've had heart issues in the past. I haven't had any problems yet.

      When I told my doctor I was concerned about the side effects he told me that he has had patients tell him that it's like taking a vitamin where they don't notice any negative side effects.

      So far so good!

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        #4
        Hi jnet~

        I found this thread from last year http://www.msworld.org/forum/showthr...d-as-it-sounds

        It may help to see that there is some good news reported, but only you will have to make that decision. There is no drug out there that has a "one-size-fits-all" label - no magic bullet for everyone. You might try it and see if it's the right fit for you and if not, there are plenty of other DMT's available.

        I hope it works well for you
        1st sx '89 Dx '99 w/RRMS - SP since 2010
        Administrator Message Boards/Moderator

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          #5
          Originally posted by jnet1589 View Post
          the doctor wants to put me on it and we started the paperwork. I read good things on it but here. All I hear from you guys is bad news. Did I make a mistake is there anything good out there on this?
          I've been on Gilenya for over a year now and I've had no obvious side effects to speak of, my 1 year MRI showed no new enhancing lesions, and I've had no relapses over that year.

          A month before starting, I had a bad flare and terrible fatigue. My energy levels are significantly improved.

          The bad news: my white blood cell counts are low but not so low as to cause concern. I haven't been more sick than usual and made it through flu season fine.

          My Neuro is concerned about my liver enzymes. They are up and not dropping. I quit all my other meds and supplements to rule them out. Some of them could also caused liver issues, and am waiting on next blood test. My liver enzymes even went up on Copaxone, so I seem to be susceptible to that.

          All in all, Gilenya has been the most benign drug I've been on. I feel pretty darn good considering I have MS. I workout and bike regularly, work full time, and go to school.
          Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

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            #6
            I started in Jan this year. I have no noticeable side effects. Haven't had an MRI or blood work done yet and my eye exam is tomorrow and neuro on friday so within the next month or so we will know more. I will say that the first couple weeks I didn't feel great a little more MS-Y I think was my body getting used to the new meds but I'm back to "normal" now so no biggie.

            When I was looking in to G I told my husband there are so many people saying so much bad about it on the message boards and we both kind of agreed that people don't really post about how good they feel. Or when something isn't bothering them.

            I don't mean that in a bad way but it's true. It's been 2 1/2 months I have nothing to report or to say so I don't... For me it would be like logging on to my facebook and saying "well I had and absolutely average day. Nothing good, bad, or exciting happened." Because that's where I"m at. I take it every day at the same time I haven't missed a single dose and I feel nothing which is not a bad thing, just not a notable thing.

            That being said I've heard some really great stuff about G which is why I decided to go with it! It's all trial and error.

            Good Luck!
            Sos219
            4/24/2014
            Avonex

            Gilenya 1/29/2015- present

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              #7
              Update: Liver Enzymes

              Originally posted by Koshtoo View Post

              My Neuro is concerned about my liver enzymes. They are up and not dropping. I quit all my other meds and supplements to rule them out. Some of them could also caused liver issues, and am waiting on next blood test. My liver enzymes even went up on Copaxone, so I seem to be susceptible to that.
              My liver enzymes are back to normal I took some large doses of ibuprofen for an old back and hip issue that flared up, plus zyrtec for allergies and a number of vitamins and supplements shortly before my previous bloodwork. I quit everything but the gilenya and milk thistle (supposed to help the liver) and my enzymes are back to normal. I'm adding back some of the supplements and will retest in a few weeks.
              Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

              Comment


                #8
                Originally posted by Koshtoo View Post
                My liver enzymes are back to normal I took some large doses of ibuprofen for an old back and hip issue that flared up, plus zyrtec for allergies and a number of vitamins and supplements shortly before my previous bloodwork. I quit everything but the gilenya and milk thistle (supposed to help the liver) and my enzymes are back to normal. I'm adding back some of the supplements and will retest in a few weeks.
                thank you all for your responses I really appreciate it I will start in about two weeks I'm going to see my son in Colorado. When I come back then I will start. Has anyone gained weight gilenya?

                Comment


                  #9
                  Originally posted by jnet1589 View Post
                  thank you all for your responses I really appreciate it I will start in about two weeks I'm going to see my son in Colorado. When I come back then I will start. Has anyone gained weight gilenya?
                  I have not. I've lost a little weight, mostly from working out.
                  Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

                  Comment


                    #10
                    5.5 years on Gilenya with no issues. Very happy and saw an almost immediate improvement in MS however a lot of that was not having the flu symptoms that both Avonex and Betaseron gave me. Seriously those were so hard on me I almost stopped both of them figuring untreated MS was better.

                    Anyway the side effects are scary but from what I have seen not terribly common. I was in the study with others and we talked from time to time none of the ones at my study center ever had any major issues.

                    As far as I am concerned Gilenya was the best thing to happen to MS ever.

                    Everyone is different of course but IMHO it is worth trying it and seeing how you respond. For me it was great but not everyone is the same.

                    Good Luck hope your experience is as positive as mine.
                    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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                      #11
                      FWIW, my new MS specialist I just saw today was very positive about Gilenya. She said Tec may have been oversold at first and that Gilenya's efficacy rate is twice that of Avonex and while it hasn't been compared directly to the other drugs, it does seem to be better than the CRAB drugs, Aubagio or Tec. She said for her patients it seems to be very well-tolerated; she hasn't had any complaints about S/E's.
                      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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                        #12
                        Originally posted by jnet1589 View Post
                        the doctor wants to put me on it and we started the paperwork. I read good things on it but here. All I hear from you guys is bad news. Did I make a mistake is there anything good out there on this?
                        Gilenya is working out great for me! I had tried rebif but that made me feel like I constantly had a cold. I also tired copaxone and judge me all you want but I couldn't handle giving myself a shot. Take into consideration I was diagnosed when I was 17. I hadn't been on any medication till November 2014, at 21. I've been on it since then and I love it.

                        In the beginning my blood pressure was low but nothing super low where I'd have to go to the hospital. Now I feel great. It's a lot easier for me to administer and, up to now, no real side effects.

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                          #13
                          Gilenya has been amazing for me! I have been on it for six months now, and aside from a little more fatigue the first month (I take it right before bed, no issues with fatigue anymore) and the expected lower lymphocyte count, I have had no side effects. I feel like myself again! I never realized how bad I felt on Rebif until I stopped taking it.
                          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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