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I’m Scared. Copaxone site reactions any advice or help?

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    I’m Scared. Copaxone site reactions any advice or help?

    Hello Everyone,

    I have been taking Copaxone since 2013 with no reactions. Before Copaxone I tried various other medications with relapses. It seems Copaxone is the only one that works for me. Unfortunately, about 3 months ago I begin to get, what felt like, very bad reactions after the shot. I became flushed, my chest was tight, I had trouble breathing and pain soon after the injection (I don’t use the gun). I stopped taking the shots on my own because I became so scared. I went into denial thinking running and healthy eating would prevent relapse. It didn’t, I have new brain and spine lesions and will begin IV steroids today.

    I talked to my neuro and he he said that we need to discontinue Copaxone—(the only thing that’s worked for me). He is suggesting a monthly transfusion called Natilizumab (from my basic understanding) kills my immune system. I’ve worked in healthcare my whole grown life and I don’t think it will be possible anymore if I change to this.

    Does anyone know of a way way I could stay on Copaxone? Is there a way to stop these reactions? I take the 40s 3 times. Will the 20’s not give the same reaction?

    I’m really scared and I feel like this is the best place to ask people who understand. It seemed everyone was surprised that I was having reactions, but I’ve read about here..so it’s real.

    #2
    Can't help with the Copaxone. But am on Tysabri, which is what your neuro is suggesting. It doesn't kill your immune system like chemo, but can suppress it some. Many people don't have issues with it. I have trouble with respiratory infections, but always did. There is a thread in medication forum for Tysabri.

    Tysabri is one of the highest rated needs for stopping MS progression. Since I our relapsed on Copaxone, your neuro wants to put you on something that has a higher efficacy rate than opaxone. But it has it's risks and issues. So it comes down to your own risk tolerance. If you ever want to ask questions, please feel free to reach out.

    I hope you feel better soon and recover quickly and fully from your relapse.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      Thank you

      Thank you for the response and well wishes. I’m going to check out the other forum you mentioned also. I really wish I knew what triggered those reactions.

      thank you, I hope you’re having a good day!

      Comment


        #4
        I had two of those reactions and they are certainly scary. I´m now on Ocrevus and opted for that over Tysabri- fewer infusions per year and potentially lower risk of PML. It´s worth asking your neuro about Ocrevus.

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          #5
          Originally posted by Temagami View Post
          I had two of those reactions and they are certainly scary. I´m now on Ocrevus and opted for that over Tysabri- fewer infusions per year and potentially lower risk of PML. It´s worth asking your neuro about Ocrevus.
          I took Copaxone for about 6 years too long. I have permanent dents in my legs from the injections. I didn't have many choices as I was diagnosed over 30 years ago. I think Ocrevus is the medicine that they have to offer now. I would most definitely opt for it.

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