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My experience with Gilenya!

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    My experience with Gilenya!

    I was so excited when an oral medication became available! I took the tests to determine if I was a good candidate for Gilenya. The only medication I was taking regulated my occasional runaway heart which I have had since I was young. Nothing showed up on the EKG to cause any concern so my appointment was scheduled.

    From the start of the observation period I felt very comfortable. Cushy lounge chair, TV, a bag of goodies and relax for 6 hours. After several blood pressure checks, one of the techs said my heart rate was a little slow, but no problem. The next time they checked my heart rate slowed a little more. I was still ok but they decided to check with my neurologist. Well I was getting a little bored so I decided to do some stretches. When the tech returned my heart rate had increased so they gave me the Gilenya. I never told the tech about exercising. I didn't think anything about it!

    I was released to return home and felt great. I continued to take the Gilenya and was cleared to take the increased dosage. For several months I was fine and then I noticed I was tiring a little more than I normally did. My follow-up with my Neurologist went well. MS and fatigue are normal. As the months went by I noticed that I tired easily and was so weak when I went outside that I would sometimes have to lay down without warning. I continued to exercise at the gym and sometimes stepped off the treadmill before stopping I took belly dancing classes! Crazy I don't think enough oxygen was going to my brain but never put together how I was feeling with side affects of medication.

    My husband was worried. We started to monitor my heart rate which was very erratic and my blood pressure was too high. I was referred to a cardiologist. Test results showed nothing.

    I started having problems with my eyes. When I read sometimes part of the word blacked out then it would clear. I was diagnosed with macular edema. Apparently this is a more unusual but serious side affect and my Neurologist took me off Gilenya. I stopped taking the heart medication after consulting with doctors about my erratic heart rate. It took me about eight weeks for my heart rate to return to normal and the macular edema to resolve itself.

    Not long ago I read on another website where someone with
    MS recommended exercising to increase your heart rate during the Gileya observation period. I DON'T RECOMMEND DOING THIS!

    #2
    They do it for a reason you know

    It's for your own good and to see if you are able to take the medication in the first place. Then when they get the results then can see if you should be on it or look into another DMD for you that doesn't cause an issue. They are looking out for what's best for you.

    You were good to let your neuro know about the issue with your eyes since Gilenya can bring on Macular Edema which is why they test you before you start and after your first 3 months.

    It's good to hear about people's experiences with medications, but remember everyone is different and also neuro's have protocols set up for your protection. If something someone says like in your case about the exercise, ask your neuro or neuro's nurse about it before taking advice such as that. That's what they're there for, to help

    Taking a pill is nice, but flirting with heart rates and otherwise could be bad for your health. I'd take a shot in a heartbeat every day, twice or three times a day if I had to over the chance of heart problems or losing sight.

    Good luck in finding an DMD that will work for you and be the one to help you out!!
    RIP Jenna's Beloved Momma
    Best MS Support System Ever
    7/42 - 12/12

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      #3
      It might have been me who posted about the exercise. When I first started the clinical trial for Gilyena my pulse fell below the threshold for the trial so I walked around the building a few times before the next check and was able to stay on the study.

      That said I don't recommending cheating the pre-gilyena work up because as Jenna said it is for your own good. Just because I chose to do it and it worked ok doesn't mean it is a good idea.

      My wife will gladly tell you that when it comes to my own health I am a moron. So taking my advice on health maters is a bad plan.

      If it was one of my post that caused you to try exercise I apologize sincerely. Knowing how unhealthy my life is I try to avoid giving medial advice. That said glad the issues are resolving and sorry if I was a contributing factor to your problems.
      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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        #4
        Starting Gilenya

        Hello. I am wondering if Tao Warrior and I are in the same Gilenya Trial or at the very least at the same MS Center in Charlotte, NC. I might have taken the same walk around the same building for the same reason. I went thru the start of Gilenya twice without any significant heart rate drop but I did have to get out of the comfy chair during the six hours and move around quite a bit.

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          #5
          Nope I was in the trial in Durham at Duke.

          I do wonder about your comfy chair comment though. They sit us down for 6 hours in a nice seat with wi-fi, the nurse actually brought me lunch so I didn't even have to leave the room for that.

          No wonder my pulse rate was low sitting on my rear all day.
          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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            #6
            My Gillenya experience

            I know it has been a long time since I posted but it took me that long to remember how to post on the
            MS forum. My memory is not what it should be.

            TaoWarrior
            I need to set the record straight. My DH said "You would have done anything to be approved to take Gilenya" I guess I was just fooling myself. I want you to know that you didn't have anything to do with my decision to try to increase my heart rate during the observation period. I made that stupid decision on my own and I paid for it.

            I am currently taking Tecfidera am tolerating it well. I seem to be controlling fatigue by taking a quarter of a nuvigil in the morning and again in the afternoon. I still have to rest after lunch but I have a bounce back in the late afternoon/early evening. I am Thankful for every bit of energy I can get! I have to keep up with my high energy dogs!

            I read all the posts and I know this is where I belong. Thank you all who share your stories.

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