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New to Betaseron - feeling neglected

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    New to Betaseron - feeling neglected

    I recently had to come off Tysabri after 18 doses because I developed antibodies against it. Bummer. But, after a lot of discussion with my neuro, we decided Betaseron would be a good option for me. Well, I got my shipment today, and I gave myself my first injection, using the video with Ms. Not An Actual Patient and the downloadable stuff. But she keeps referencing my training guide and the mat and all the diary, etc. Now, when I was on Avonex, I was contacted by a nurse, I got training materials, and all that. BetaPlus told me I was on their 0 copay program, but that's it. Am I supposed to hunt down the training materials myself? Is there something wrong with this picture? I'm confident in my ability to inject myself (I have experience with this kind of thing), but somehow I feel like BetaPlus should have made some kind of effort to contact me.

    Anyway, just wondering if my expectations are realistic. Kind of feel out there on my own right now.

    Thanks.
    Dx'd on 10-17-11
    Avonex since 10/28/11 - Tysabri since 1-26-12 - 18 doses, then Betaseron since 9/4/13
    Don’t be ashamed to need help. Like a soldier storming a wall, you have a mission to accomplish. And if you’ve been wounded and you need a comrade to pull you up? So what? – Marcus Aurelius, Meditations Book 7

    #2
    Try calling Beta Plus at 1-800-788-1467 if you haven't already.

    Its possible some signals got crossed or someone's assuming you're an old hand with the DMD's.

    Are you doing a full dose or are you supposed to start at a 1/4 dose and then ramp up?

    I'd also request a visit from a Beta Nurse if you'd think it would help.

    Comment


      #3
      When I began Beta a nurse came to my home to teach dh & I how to do the shots. She watched while I did the 1st one. After being reassured by the training nurse & the nurse assigned to me (she had had surgery between my dx & 1st shot so couldn't train me) that someone would call me periodically to check on me I believe I received a grand total of one phone call.

      I did call BetaPlus twice, once a machine answered & wanted me to leave a message. Second time I got a real person but they were clueless. I got more help here at MSW.

      I'm not trying to discourage you from B, I think maybe it depends on the nurse you get.

      Definitely call BetaPlus, like Bob698 said perhaps signals got crossed?
      DX 10/2008
      Beta Babe 12/2008-07/2013
      Tecfidera 07/2013-01/2018
      Aubagio 01/18-09/20

      Ocrevus 09/20-present

      Comment


        #4
        New to Beta Also

        I am also new to Beta. I am starting my injections this week. They have already been in touch with me numerous times. They first called to see if I would like medicine sent to me while I wait for insurance approval and have called a few times to make sure I received it (there was a mix up with fed ex initially). Also, my nurse has called me and explained everything and has sent me another training kit on top of the one I received from my doctor. I am just waiting for that to get here and then I call back and they send a nurse to my house. I would definitely call them as someone else suggested, I am sure there is a mix up!
        Dx RR August 2013
        DMD Betaseron
        Nursing Student (RN)
        Mother to 1 year old

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          #5
          Hey Chucklebug,

          I'm with everyone else who had a nurse come out. Maybe they figured since you have done Avonex, and put that looooong needle into your thigh, the sub cutaneous mini needles would be a cinch

          But you should have a titration schedule from either your doctor or the Beta nurse. Otherwise, you can be hit hard with side effects, if you start with a full dose.

          In fact, on occasion, I'd have to go off Beta for a couple of months, and each time I started back they'd have me titrate up the dose again.

          Give them a call.

          Comment


            #6
            So sorry Chucklebug

            It's a shame more wasn't done for you. My suggestions in taking Betaseron (at least for me) is to ice my injection area for about 9-10 minutes before and to take 2 tylenol before injection to ward off flu like symptoms. My neurologist said to take the Tylenol and not ibuprofen, so I listened and it helps. Then, the beta nurse had recommended rubbing the area of injection after for at least 5 minutes afterward.
            You have been through a lot changing meds. So hang in there!

            Comment


              #7
              Strange! I switched from Copaxone to Beta and they still sent a nurse to my house. I agree with pp, call BetaPlus and ask for a nurse to come. Make sure you're on their radar.
              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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