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Making the switch from Tec to Gilenya

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    Making the switch from Tec to Gilenya

    My Neuro's office filled out the necessary paperwork and faxed it to Novartis. The nurse contacted me and gave me more information than a normal person could comprehend. Then my Navigator called. Everything she told me was totally contradictory to what the nurse told me. I told her that I am trying to make this switch and you guys seem to be more confused than I am and I am not comfortable with that. I suggested she e-mail the nurse to get their ducks in order and call me back.

    Well the nurse called me back today and straightened out the confusion. Then the Navigator called and scheduled my EKG and my lab work. I had already made an appointment with my Neuro-Opthomolgist. I told them all it is URGENT that I start on Gilenya prior to 10/27 when my benefits change. So far it looks as if that shouldn't be a problem.

    The only problem I have is I have to drive over a hour to have EKG and aka work then do the same for first dose. If not I will have to pay for the first $125.00 then file all kind of paperwork to be reimbursed.

    This will be my 4th DMD and I have never had so much trouble starting on the med. I sure hope the med is better than the people over seeing it.

    Just had to rant a little bit. Did anyone else have trouble getting started on Gilenya?
    Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15

    It's hard to beat a person that never gives up.
    Babe Ruth

    #2
    I had some trouble getting started on Gilenya. My navigator was on an extended leave, and it seemed like the company was disorganized. There was an issue coordinating the paperwork and pre-authorization with my doctor, and someone from my insurance company actually stepped in to figure that out. (Not sure if it was my Dr's office or Novartis causing that issue.) My only other experience on a DMT was with Copaxone, and Shared Solutions has their act together.

    It was worth the hassle for me. I've had no side effects, so I haven't had to call to talk to a nurse. A Gilenya nurse called several times for the first 3 months to check in on me. I haven't had any insurance or refill related issues.
    Optic Neuritis in 2004, Dx with RRMS in 2012. Copaxone, Sept. 2012 - September 2013. Gilenya, February 2014 -

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      #3
      i have yet to speak to the navigator assigned to me

      Company is very disorganized, nurse was all right but contacted the navigator line at least 10 times over a 3 week period and never once spoke to the one assigned to me.

      First dose - the facilities they use have only slot a day mon - fri, no weekend appointments. Had to take a day off from work just to go.

      It took three weeks from the first call to the first dose, nothing like Avonex or Tec.
      Diagnosed 9/2010, copaxone 10/10, avonex 10/12

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        #4
        Switch to Gilenya...haveconcerns

        My Neuro ordered Tecfidera for me (had been on Copaxone for ~9yrs or so). Over a six month period I developed a constant sharp pain in the right upper quadrant just below the breast area, started feeling awful every single day. Trust me, I do not consider myself a weenie when it comes to medical procedures but I was miserable. Was switched to Aubagio and all seemed fine. Then the itching along both arms started....to the point of scratching myself raw and bruised. Some minor scalp itching but reviewing any possible changes in detergents, soaps, etc. proved negative. Now my Neuro has RX'd Gilenya. I have had ekg/ecg, labs drawn, and recently saw a neuro-opthamologist for OCT imaging. I am NOT feeling the love abt this new RX. Had hoped 3x/wk Copaxone was an option, but I was told it wouldn't do any goid as I was now considered borderline SPMS. Hmmm. I can't argue abt that....have felt myself declining over the last 2 years....no MRI for me due to stapes bone implant done in early 80's with unknown compatibility. :^(

        I am concerned abt side effects for Gilenya given my less then stellar experiences with Tec & Aubagio. And, honestly, I am scared, and sad and alternately fed up. Try to put on a happy face but it gets harder every day.

        I would really appreciate any feedback you all can provide about your experience with Gilenya. The one gal i know with MS hasn't taken it so could use a sounding board. Thanks -

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          #5
          Yikes. I haven't switched yet but I have to say, Shared Solutions (my first) is the best; they had me spoiled. The Beta people were pretty decent but the Tec people weren't great. I'll be discouraged if Gilenya people are even worse. :/
          2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins!) Dec '09: Started Beta. Oct '13: Started Tecfidera. May '15: Considering Gilenya.

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