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Is Gilenya as bad as it sounds?

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    Is Gilenya as bad as it sounds?

    After my appointment with the MS specialist my neuro wants to put me on Gilenya. I have been looking at the various posts and it looks scary. Im pretty sure most posts are by the people with side effects and those without dont post threads.
    What tests need to be done before starting?
    I have seen the following discussed:
    Liver Enzymes
    ECG
    CBC
    Lung function
    Eye Exam
    If there are any more please respond.

    The Macular Edema sounds pretty bad. Has anyone on here had this problem? I wonder how often this occurs.

    #2
    Gilenya has a website that has all of the official information about the medicine. I know that a lot of people want to know other people's experiences, but for factual information the best place to go is right to the source.

    On the website there's a section about the steps to getting started with Gilenya http://www.gilenya.com/c/steps-to-starting. There are also links to the patient medication guide, safety information, the prescribing information and information for healthcare professionals. In the documents somewhere are the answers you are looking for.

    The information for healthcare professionals says:
    1. Baseline Assessments
    Before starting treatment with GILENYA, baseline assessments should be established by the patient’s respective health care providers. Confirm these exams and review the results before initiation.
    o Recent (within 6 months) complete blood count and liver function tests
    o Ophthalmologic evaluation
    o History of chickenpox or varicella zoster virus (VZV) serology/vaccination

    2. First Dose
    o ECG prior to dosing and at the end of observation period


    Lung function tests are not a part of the official recommendations. But since breathing problems are a possible side effect a lot of doctors are choosing to have them done before their patients start Gilenya.

    The prescribing information says:
    In patients receiving GILENYA 0.5 mg, macular edema occurred in 0.4% of patients. That's less than 1/2 of 1 percent. I think I've seen maybe 4 people post about macular edema in several different MS forums since Gilenya came out. It doesn't happen very often.

    Comment


      #3
      I was on Gilenya for almost a year with no side effects - no breathing problems even though I have a history of asthma. My liver enzymes never budged. My vision continued to be (correctable to) perfect, which is amazing because I have had multiple episodes of optic neuritis; I have always worn glasses for being near-sighted. My eye doctor says macular edema is very rare, I would notice such changes early as soon as they started, and they would likely go away when I discontinued the medication. My complete blood counts (CBC) were always fine, including my white blood cell count, even when I was sick once with a fever and the stomach flu.

      I had to stop Gilenya only because I developed severe bradycardia (slow heart beat) eleven months into my treatment, causing me symptoms of feeling faint when I stood up. This is apparently very unusual, especially when one has not had any trouble with bradycardia before.

      I stopped the medication and my heart rate is now fine; my EKG was always OK.

      I think that although one has to watch those parameters as mentioned at the website, for most people Gilenya works very well and causes no, or very few, side effects.

      I've changed to Aubagio and so far I am doing OK on that too.

      Comment


        #4
        Hi pballer,

        I was given something by my opthamologist when I was on Gilenya that helped me feel a bit more at ease about developing macular edema, called an Amsler grid. It was a small white square, with a black grid on it that had a small dot in the middle. I could self-test my eyes by focusing on that dot. If I noticed any changes in my ability to focus on that dot with either eye, I was to contact my opthamologist ASAP. You can find the grid and download it here http://www.amd.org/living-with-amd/r...sler-grid.html. The sooner macular edema is treated, the better the prognosis.

        I was one of the few that did have to go off Gilenya, though. My WBC counts got low enough to allow some opportunistic infections to develop. My circumstances leading up to them was quite unusual, though. A major surgery, followed by a bad relapse, several weeks of in-patient therapy, and not being under the care of my regular doctors (including my MS Specialist, who was on staff at a different hospital), all played a role as to why I continued on the medication longer than my MS Specialist would have allowed.

        The posters that share negative experiences do outnumber those who share positive ones, unfortunately. That being said, I only recall seeing one post here about someone who developed macular edema while they were taking Gilenya. There's risks with all medications, I had a serious unknown reaction from Rebif that landed me in the hospital for 3 months.

        I did feel Gilenya kept me more stable than any of my previous DMTs, and some of my symptoms improved while I was on it. Needless to say, I was sad when I had to discontinue it. All any of us can do is weigh the potential benefits of a drug vs. the risks. I decided the risks of active disease & the progression of my disabilities was far greater (and, quite frankly, scared me more), than not treating it. That's also the reason I am currently on Tysabri.

        Best of luck in your decision .
        Kimba

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

        Comment


          #5
          The posters that share negative experiences do outnumber those who share positive ones, unfortunately. That being said, I only recall seeing one post here about someone who developed macular edema while they were taking it.

          I have been on gilenya for 2 yrs and I did not develop macular edema.

          I am the same symptom wise, but I was dx in 1995 so glad to still be walking even tho off balance.

          Comment


            #6
            I have been on it since Mid October and have had no real problems and the only problem I did experience was handled with aleve.

            I had mild headaches for about a week or so once I started taking it. I love the freedom of not taking a shot etc.

            When I was getting the "work up" to begin taking the medication my blood work indicated a potential for shingles for me. The drug company wanted me to take the shingles vaccine, but due to my age, I was not allowed the vaccine (I am only 44). So instead the drug company paid for me to have the chicken pox vaccine and 28 days later the booster shot.

            I have felt very comfortable with taking the medication, and I honestly pray I never develop any problems.

            Comment


              #7
              Originally posted by Tracelyn View Post
              I have been on it since Mid October and have had no real problems and the only problem I did experience was handled with aleve.

              I had mild headaches for about a week or so once I started taking it. I love the freedom of not taking a shot etc.

              When I was getting the "work up" to begin taking the medication my blood work indicated a potential for shingles for me. The drug company wanted me to take the shingles vaccine, but due to my age, I was not allowed the vaccine (I am only 44). So instead the drug company paid for me to have the chicken pox vaccine and 28 days later the booster shot.

              Funny, you and I have the same name, I'm Tracy Lynn 😇

              I have felt very comfortable with taking the medication, and I honestly pray I never develop any problems.
              Honestly I loved Gilenya , no side effects at all except for a nasty 30lbs over 17 months. It's just gone to far with the weight gain for me who already struggles with Joints dislocating for very little reason. I'm requesting a drug holiday in Febuary. Other wise it's awesome!

              DX 2008
              Tracy

              Comment


                #8
                Gilenya has saved my life. I know it sounds frightening (I was worried too when I started it), but after going for my required testing for macular edema and blood work and having no problems as a result, my mind was much more at ease about it.

                I had tried Copaxone (left horrible lumps on my skin) then 2 different types of beta shots (one I cannot remember the name of because I was on it for such a short time) and Rebif, well those almost killed me from the flu-type symptoms. I kid you not, by the time my Dr. took me off of Rebif and put me on Gilenya I had lost over 40 lbs and could barely get off the couch because Rebif had made me SO SICK that I honestly wanted to die.

                The drugs I was taking before Gilenya were not controlling the progression (I had new lesions every time I had an MRI). I have not had a single lesion develop since starting Gilenya (almost 3 years now) and not only that, there is evidence that a few of them are healing!

                I am much better able to function and have had no side-effects like I did with the 3 previous drugs I had taken. I am more active and feel much better than I have in years.

                It is a very personal decision, I can only tell you that is has worked very well in my case. My MS Dr. says that her patients on Gilenya are doing well on it too.

                I wish you so much luck, I know it overwhelming to make these choices, I can only tell you that for me it has been a lifesaver.

                Comment


                  #9
                  No problems with Gilenya, but it didn't work for me

                  I was on Gilenya for the better part of 2013. I am a 65 yo male and had been on Tysabri for four years, stopping because of elevated anti-body levels. I haven't had a real MS event in years, currently use a scooter for longer distances but can walk with forearm canes and a Walkaide to help with foot drop.

                  I had no side effects from Gilenya, OTH it was not noticeably effective for me.

                  Fortunately for me, my neuro had me take a the relatively new blood test that measures anti-body levels, mine were low enough that I could resume Tysabri.

                  Since restarting it last November I'm stronger, more energetic and happier.

                  G

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                    #10
                    did get Bell's Palsy

                    10 days after chicken pox booster vaccine I did come down with Bells Palsy (the vaccine reactivated the herpes in my system).

                    Stunk - but I did recover.

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                      #11
                      I had my 3 month checkup after being on Gilenya a few days ago.

                      My eyes were checked and there was no change from 6 months ago. I had to admit that I am almost symptom free as my MS goes.

                      I honestly feel like my life has been given back to me

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                        #12
                        I'm also on Gylenia and I have nothing negative to report. It's convenient for me. I've been on all the other meds (injectables) and Tysabri. This works for me. I've had no side effects. Good luck.
                        I am a phenomenal woman; and still I rise.

                        Comment


                          #13
                          4.5 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.
                          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

                          Comment


                            #14
                            Gilenya

                            I had my first dose yesterday and I was worried about what might happen. I had the blood tests the Macular Edema test all ok Had the ECG then took the tablet. I thought I was in for a bit of a ride. However my heart rate dropped 3 beats per minute BP and pulse were good. Had the ECG at the end and went home. No issues so far, so any fear that people may have about it may not be an issue.

                            Comment


                              #15
                              Gilenya

                              1 week and two days on from my first dose of Gilenya. I am walking better and generally feel better in my self. i am more alert and my wife says its good to have the old Robert back again. Fantastic drug

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