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On Lemtrada, breakthrough treated with Rituximab

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    On Lemtrada, breakthrough treated with Rituximab

    In Feb I was forced off Tysabri due to high JCV & years on Tysabri.

    I chose to fly to Germany to get Lemtrada in April- all can be found on my Lemtrada blog through google's free blogging site

    Anyway things were going Great for 4-5 months, I was getting function back I had not had in years & my fatigue was almost nil.

    In Sept I started to experience some return in minor sensory symptoms & was given Ritux as my CD19 cells had started to creep up (labs also posted on the blog).

    Now I'm wondering if the treatment was not worse than the symptoms. I am very tired, like I haven't been in months. I am wondering if this is the MS, the Ritux or just my new normal.

    Has anyone experienced fatigue in the weeks following Ritux?

    FYI, I am 11+ years diagnosed with MS and otherwise healthy.

    #2
    lemtrada???

    hi,

    I was just wondering what made you choose Lemtrada over say stem cell therapy. I am at the stage where I am considering both as an option. I have had MS for 6 years and in my 20's. I feel my neuro is no help. I have been on rebif and now copaxone and feel no benefit and I am the stage where I use a wheelchair as cannot walk along with many other symptoms. Neuro is not offering no alternative even though I feel no benefit on Copaxone. Any information would be much appreciated.
    thank you

    Tos

    Comment


      #3
      tos,
      I read your post and I thought that maybe you are not getting good advice from your neurologist. Where are you located? Do you see an MS specialist? If not, you need to get treated by one. I can understand that you want to be on the 'latest and greatest', but Lemtrada may not be the answer. I hope it is, but you should get the advice of an MS specialist. Good luck

      Comment


        #4
        hi Jerry

        thank you for your message. I am not getting any advice from my consualtant neuro he just thinks its best I stay on Copaxone but I have been on this for nearly 2 years and feel no benefit in fact I feel I have gone worse as I could walk slowly before now I am in a wheelchair. I feel I am having to do my own research and just want to try an alternative medication. I have heard good information about Lemtrada so still researching more on this. I am based in the UK in Lancashire so hoping once I get all the information I can convince my neuro to let me try an alternative!

        Comment


          #5
          Hi tos,
          how are you ? What did you decide ?
          Your story sounded much like mine-not wheelchair, scooter. I was offered Tysabri in 2006, took it and am grateful for this great med for me
          Hope you are doing well
          Linda

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