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Please! Did this happen to anyone else?

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    Please! Did this happen to anyone else?

    I had my first Gilenya dose on Thursday morning. In the 6 hour watch, my pulse dropped more than 20 points (low 40's) and took more than 36 hours to start to come back up. It never did get to its original starting point but at least it was in the 50's now. When my pulse/blood pressure didn't improve, they admitted me to spend the night, called in a cardiologist and in the morning when my pulse came back up they would try and give me a second dose and would then watch me for another 6 hours. When my Neurologist came back the next morning (22 hours later) and checked my pulse/blood pressure-which was still in the low 40's, it was decided to give up on Gilenya all together. I came home Friday evening. The problem is I feel like I am in a full blown exacerbation. Constant, overwhelming weakness, no sleep, trouble speaking, PAIN, worsened spasticity, my limbs have hesitation if they move at all-there is more and each day is worse. There is a call in to my Neurologist. I'm asking if taking a new medicine ever put you into a flare?

    #2
    Originally posted by Kalliope View Post
    I'm asking if taking a new medicine ever put you into a flare?
    Short answer: yes This has happened to me on nearly every medication I have tried. There's no more space for medicine mistakes when it comes to my MS!

    I'm sorry you're going through this and I hope you're feeling better since you posted.

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      #3
      Thank you for your reply

      I am trying to get back to what is normal (for me). Except for my speech improving some, not much has changed. Everything is still a struggle. I've been on several of these ms medicines and never had this kind of reaction from any of them before. Sure, I've had different side effects, but nothing like this. My Neurologist wants to talk to me about another one at next weeks appointment. I'm not sure what to do-I'm running out of ones to try! Thank you for your reply-I appreciate it!

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        #4
        [QUOTE=Kalliope;1477281]I had my first Gilenya dose on Thursday morning. In the 6 hour watch, my pulse dropped more than 20 points (low 40's) and took more than 36 hours to start to come back up.

        My pulse actually went down a lot too, I didn't have to give up on it though.
        They kept me there for 8 hours instead of 6 and they had me walk around the building to make my bp go back up. I did feel extremely tired the initial 2 months from my bp being so much lower than usual.
        My normal bp is 115 and when I first started it was always 98. Now it's back to where it usually is and I started in November.

        Im sorry that it didn't work out for you

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