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My Gilenya First Does Experience

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    My Gilenya First Does Experience

    I took my first does of Gilenya at 8am last Wednesday morning. I was being monitored at a Concentra Immediate Care center. I wasn't sure what to expect, but was happy to see I wouldn't' be hooked up to a heart monitor or anything. With my anxiety, I'm sure i would have been watching that thing like a hawk! They started off with an EKG, then did checked my heart rate and blood pressure both sitting and standing. My BP was a little high, but it was due to anxiety I'm sure since its normally perfect. Then the time came to swallow the pill...Here we go!

    For the first hour, I was checked every 15 minutes. They checked my heart rate and BP both sitting and standing every time. After the first hour I was checked every half hour until the 6 hours were up. My heart rate or BP never changed! I was expecting at least a little drop in heart rate, but i was fortunate i guess. Hopefully that is a sign that this could work for me! I was asking the nurses there and they said they have never had a bad First Dose Observation. They had a few people get up and walk around the facility to get the heart rate to increase a little, but that is it. They mentioned changes usually start to occur after the first half hour, so I also took that as a positive sign.

    Throughout the 6 hours I felt fine. I was definitely anxious at first, but that faded after a couple of hours. My wife and I passed the time playing cards. I was able to eat and drink whatever i wanted and was even able to walk around. I just wasn't able to leave the facility.

    By the evening i was really tired though. I'm not sure if it was due to the Gilenya or not because i was out late the night before and had to get up early for my first dose. I will keep you updated on if the tiredness hangs around. I took my second dose at 7:30 Thursday morning and went to work. So far all is well!

    It is now Monday and I am still feeling perfectly fine. The fatigue is gone, so I am thinking it wasn't due to the medicine. Hopefully this is a good sign!

    Also, I have started an MS Support group on facebook if anyone is interested in joining. It is at

    **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**


    Thanks for reading. I'll keep posting updates if you are interested!

    #2
    13 days in and still feeling great!

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      #3
      Delayed Menstrual Cycle???

      Are you female? Has Gilenya affected your menstrual cycle?

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        #4
        I had my first Gilenya dose today and so far so good. I had to stay an extra hour because my heart rate went down, but I feel fine.

        We'll see if it affects my cycle...I'm sure it will as my body has been under tremendous stress. I also had 5 days of steroids from a flare up.

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          #5
          Hello Miss Michelle

          My heart rate dropped in hospital too in October 2012.

          I am very interested in how your menstrual cycle goes???

          I have been on Gilenya 4 months now and i have had bad back pain and my periods have been delayed each month. I have had sore nipples for most of the time too.

          I would really like you to keep me informed on how your menstrual cycle goes??? My neurologist doesn't think it is Gilenya doing this but i do. In the next few weeks i am going to have a pelvic scan to rule out other causes.

          It is bizarre that my name is Michelle (from Sydney Australia) and that you are "Miss Michelle"..... I am 44 years of age and was diagnosed with MS 10 years ago. I was doing quite well with Avonex over a 10 year period until las October when i had a major spinal episode. I was then moved on to Gilenya. Sorry to say this but i haven't felt well since i took that first dose at end October 2012. I'm hoping the back pain passes, that my menstrual cycle gets normal, that my pelvic scan is okay, and that i start to walk good again.

          Please keep me informed of your progress. The more we share, the better xxx

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            #6
            Hi Michelle! I will keep you posted. I am having the "perfect storm" of illness right now. Flare up...cramps...first Gilenya dose, I'm a mess! I have to keep myself calm, freaking out just makes it worse. I'm trying to give things a chance to even out..especially after the flare up. I'm just not used to being out of commission like this. I have to accept what will be and work through the issues I guess.

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              #7
              Sorry, I am a male, but I'm glad the 2nd Michelle was able to assist with your question!

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                #8
                Hi again Miss Michelle. I do hope things settle for you

                I am glad you will keep me informed of your progress.

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                  #9
                  Thank you for posting these comments about your experiences. I am still wading through all the requirements to get this drug - and am excited about the possibilities for recovery and fewer relapses.

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                    #10
                    I'm also very relieved that it seems we can get the steroids - I'm terrified of the thought.

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                      #11
                      Just another update....6 weeks in and i am still feeling great. No side effects at all.

                      @moredebris, i hope you also have a great experience!

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                        #12
                        Prednisone?

                        Just to be sure, if you have prednisone in the weeks before or after you start your daily dose - is that a problem?

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                          #13
                          I would think it is OK, but i would ask your doctor or the Gilenya support to be sure. From what i understand, the meds you want to be careful of are the ones that affect your heart.

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