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After Lemtrada infusion

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    #1

    After Lemtrada infusion

    Hi,

    I'm not a doctor, but I just wanted to let people know that's it's normal to feel bad for a few weeks after Lemtrada infusion. After that, for me, it was like seeing the sun rise for the first time in years. Feel the wind on my face and the new ability to grab onto life much much stronger. I think now I'm much happier than most people without MS. I've been on Lemtrada since 2009. Comments are welcome.
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    #2
    Really happy for you spacedive! You sound like a happy camper. Your experience will help others who are on this or are considering

    What specifically has it done to enhance your life?
    1st sx '89 Dx '99 w/RRMS - SP since 2010
    Administrator Message Boards/Moderator

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      #3
      Hi Spacedive

      I have to switch to Lemtrada within the next year or the next flare...whichever comes first...I am betting on the flare. I am currently on TY. I am in Florida and my neuro had 20+ patients in the trials...all considered sucesses.

      I know about the side effects...and am not concerned. I am a tough bird...usually.

      I have a couple questions one which would be similar to Seasha's, because there is no patient literature out yet.

      1) What did Lemtrada do for you exactly? Did it just stop progression or did you experience symptom relief as well? Did you have a reduction in EDSS?

      2) I know you have a weeks worth of medical procedures and a "booster" a year later. Do you continue to get that "booster" dose every year or is it a one time deal?

      Would really appreciate your insight.
      Katie
      "Yep, I have MS, and it does have Me!"
      "My MS is a Journey for One."
      Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

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        #4
        I am excited to hear more from you. I am on a waiting list and plan on getting my first week of infusions sometime in August.

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          #5
          Proudly answering questions:

          - Yes Lemtrada stopped my progression. I have a lot of lesions in my head, but all of those are from before Lemtrada. No new ones and none have been active since Lemtrada. My EDSS not sure about, but each time I see my nuro doc he smiles in a very happy way. I still have MS, but it is in check. 95% MS symptoms relief as well.

          - Only need a 3 day boost when needed. I've only had one since 2010.

          -spacedive

          Comment

            #6
            Originally posted by spacedive View Post
            Proudly answering questions:

            - Yes Lemtrada stopped my progression. I have a lot of lesions in my head, but all of those are from before Lemtrada. No new ones and none have been active since Lemtrada. My EDSS not sure about, but each time I see my nuro doc he smiles in a very happy way. I still have MS, but it is in check. 95% MS symptoms relief as well.

            - Only need a 3 day boost when needed. I've only had one since 2010.

            -spacedive
            Awesome! Thanks for the answers. I am glad this drug is working for you.
            Katie
            "Yep, I have MS, and it does have Me!"
            "My MS is a Journey for One."
            Dx: 1999 DMDS: Avonex, Copaxone, Rebif, currently on Tysabri

            Comment

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