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Now on Gilenya

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    Now on Gilenya

    I just had my first dose today, and it couldn't have gone better. The only down side so far is that I've been off my Effexor for two days and I've been so tired the past couple days that I feel like I'm in a daze. Thankfully I'll be back on it tomorrow. I had no idea how helpful it was for my fatigue until I had to go without, but I'm happy that I've finally found something that works for me

    While I was at the dr's office, the Gilenya nurse came in to see me, and I have to say I'm very impressed so far. She seems awesome. She made sure to stress that she is always available and that I can call her cell any time and she will make sure things run very smoothly. I also found out the other day that Novartis automatically enrolled me into their copay assistance program, which thrilled me.

    Dealing with Biogen was a huge headache, so this is amazing service compared to what I'm used to. It took me forever before I could get copay assistance for Avonex. They also did nothing to help me out the entire time I was on it. It was up to me to start my own injections because I guess I wasn't good enough to have someone come out. Thankfully my nursing background gave me the knowledge I needed, but it's totally different doing it on yourself than on someone else. I also had so much injection anxiety, especially in the first two months. Plus, whenever I did talk to Biogen about an issue, they would just tell me they'd never heard of that before, end of story. I wondered why I ever even talked to them because they certainly couldn't care less.

    I'm so happy that there will be no more injections. Taking a pill is so much better after dealing with muscle irritation from the weekly Avonex. I certainly am very hopeful that Gilenya will work much better for me as well. After the rollercoaster I've been on the past two years, I'm hoping this will help level things out a bit more for me. I know it's only my first day, but I feel like I've finally taken a step in the right direction.
    Diagnosed 1/4/13
    Avonex 1/25/13-11/14, Gilenya 1/22/15

    #2
    That's awesome to hear! i was supposed to start yesterday but my Dr Office messed it all up so now I start next week.

    I'm on avonex right now too. So I'm excited about no more weekly injection.Though i can tolerate them if I knew they were working but they aren't, so they are extra annoying lol

    Good Luck I hope it works for both of us!!
    Sos219
    4/24/2014
    Avonex

    Gilenya 1/29/2015- present

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      #3
      Hopefully this time the schedule sticks and you can finally get started. It is so crazy how long it takes to get everything in place to start a new med.

      I don't remember if I mentioned it, but I quit my Avonex a couple months ago for the same reason you're having trouble continuing. I certainly couldn't justify putting myself through it even longer when I was almost positive I was getting absolutely no benefit from it.

      Today I've had some nausea off and on, and I'm assuming it has to be from the Gilenya, but it won't be my first time having that as a side effect. I figure it'll go away within a few days, so at this point, I'm not worried about it. Of course, it would be great if it would not bother me tomorrow
      Diagnosed 1/4/13
      Avonex 1/25/13-11/14, Gilenya 1/22/15

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